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Neurodivergence and Substance Use

This report examines the relationship between neurodivergent conditions, specifically ADHD and ASD, and substance use, highlighting the increased likelihood of problematic substance use among neurodivergent individuals. It discusses barriers to treatment, such as stigma and limited access to resources, and emphasizes the need for targeted interventions. The report includes a literature summary, community insights, and recommendations for improving support for neurodivergent people who use substances in Aotearoa New Zealand.

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0% found this document useful (0 votes)
49 views40 pages

Neurodivergence and Substance Use

This report examines the relationship between neurodivergent conditions, specifically ADHD and ASD, and substance use, highlighting the increased likelihood of problematic substance use among neurodivergent individuals. It discusses barriers to treatment, such as stigma and limited access to resources, and emphasizes the need for targeted interventions. The report includes a literature summary, community insights, and recommendations for improving support for neurodivergent people who use substances in Aotearoa New Zealand.

Uploaded by

arthur.santos
Copyright
© © All Rights Reserved
We take content rights seriously. If you suspect this is your content, claim it here.
Available Formats
Download as PDF, TXT or read online on Scribd
You are on page 1/ 40

Neurodivergence &

substance use

Evidence, insights and recommendations


Contents

Executive summary 4

Acknowledgements 5

Literature summary 6

Neurodivergence 7

ADHD and substance use 8

ASD and substance use 16

Neurodivergence and substance use in Aotearoa 22

Community experiences 30

Our process 31

Findings and insights 32

Recommendations 36

September 2024
NEURODIVERGENCE AND SUBSTANCE USE 4

Executive summary
This report investigates the connection between neurodivergent
conditions, specifically attention-deficit/hyperactivity disorder
(ADHD) and autism spectrum disorder (ASD), and substance use.
We explore the research on this topic and provide a literature
summary on substance use and addiction in neurodivergent
people. Further, through engagement with people with living
experience, we explore the perspectives of neurodivergent
people who use substances in Aotearoa New Zealand. This
report illustrates the complex nature of the coexistence of
neurodivergence and substance use, and the difficulties of, and
barriers to, seeking treatment in Aotearoa New Zealand.
This report finds that neurodivergence impacts the way in which people
engage in substance use in a variety of ways. People with ADHD and/or
ASD may be more likely to engage in problematic substance use and to use
substances to manage symptoms of their neurodivergence. Interventions
targeted towards neurodivergent people who use drugs, particularly those
focused on screening for ADHD and ASD, treatment and psychosocial
support are imperative for mitigating the risks associated with substance
use and self-medication. Stigma, both experienced and perceived, cost and
limited access to resources are barriers to neurodivergent people seeking
support.
This report is split into three sections: a literature summary, a summary of
themes from living-experience perspectives on ADHD/ASD and substance
use, and recommendations.
NEURODIVERGENCE AND SUBSTANCE USE 5

Acknowledgements
This report focuses on communities of people who use drugs
(PWUD) that are likely to experience compounded stigma as a
result of both their drug use and their neurodivergence. People
with ADHD, ASD and other neurodivergences often experience
societal ostracisation, stigma, and reduced access to health
and social services. Our systems, approaches and services in
Aotearoa New Zealand are not developed with neurodivergent
people in mind. All of these factors complicate the experience
of neurodivergent PWUD navigating the world.
Importantly, we want to acknowledge that this report takes a humanistic
approach to examining the relationship between neurodivergence
and substance use. We underscore the importance of asserting that
neurodivergence is not a deficit, rather a biological difference in the brain
that affects the way people perceive, experience and navigate the world
around them. We take a non-judgmental approach to substance use and
acknowledge that people — both neurodivergent and neurotypical, use
substances for a variety of reasons.
This report approaches this topic with manaakitanga and upholds the
harm reduction values of Te Puna Whakaiti Pāmamae Kai Whakapiri. Most
importantly, we aim to uplift the dignity of PWUD and neurodivergent
people. We hope that this report promotes understanding of the
complexities of this topic and offers a starting place for Aotearoa New
Zealand to make changes that positively impact neurodivergent people in
their ability to live long, healthy and happy lives.
Finally, we recognise the multifaceted identities of many neurodivergent
PWUD. There has been a significant deficit in research and understanding
of the relationship between neurodivergence and substance use in Māori
and other indigenous peoples, people of colour and ethnic minorities,
disabled people, women and the LGBTQIA+ community. As such, this
report acknowledges that much of the evidence presented in our literature
summary does not reflect the unique experiences of these groups. We hope
to see future research provide better insight into the unique experiences of
people from an intersectional lens.
1.
Literature
summary

Aotearoa New Zealand has faced persistent issues of


stimulant drug use (particularly methamphetamine), and
comparatively high rates of undiagnosed and untreated
neurodivergent conditions, including ADHD and ASD.
International literature has illustrated the connection between
neurodivergence and substance use; namely, the increased
harm from substances experienced by neurodivergent
individuals.
Despite this, little has been done to explore the nuances of the specific
relationships between substance use, substance use disorders (SUD), and
ADHD and ASD, respectively. The group of most interest for this report is
people who use drugs (PWUD) who meet the diagnostic criteria for ADHD or
ASD but have not received a formal diagnosis.
This literature summary is focused on reviewing a wide variety of research
to assess what is known about the relationship between ADHD, ASD and
substance use. This section aims to outline the implications and applications
of the available research on this topic and to better illustrate the gaps that
need to be addressed in future research.
Much of the available research on this topic has been done in the context of
treatment settings. Almost all of this research has been conducted outside of
New Zealand. Further, research has relied on studying people with diagnosed
ADHD and ASD. This is understandable, given the difficulties in accessing
individuals who have not been formally diagnosed. However, as a result, it is
difficult to draw conclusions about this group from the available research.
NEURODIVERGENCE AND SUBSTANCE USE 7

Neurodivergence
What is neurodivergence?
Neurodivergence, or neurodiversity, refers to differences in cognition from
typical functioning in areas such as socialisation, learning, attention and
mood. Neurodivergence encompasses an array of conditions such as ADHD,
autism spectrum disorders, fetal alcohol syndrome, dyslexia and dyspraxia.
By some definitions, neurodivergence can also include people with diversity
in behaviour and mood, including anxiety, depression, obsessive compulsive
disorder (OCD) and personality disorders.
For the purpose of this literature summary, we focused on a narrower
definition of neurodivergence; specifically examining the relationship
between substance use/SUD and ADHD and ASD. However, we acknowledge
that there are a significant number of conditions and diagnoses that exclude
people from being considered ‘neurotypical’. In future, we hope to broaden
our scope to understanding the nuances of other neurodivergence and
substance use.
Overall, there is a small body of research that focuses on neurodivergence
and general substance use. Most of the literature focuses specifically on
ADHD or ASD in individuals with diagnosed SUD. In fact, in our literature
scan, we could not find any meta-analysis examining neurodivergence and
substance use as a complete topic.
8 1 | LITERATURE SUMMARY: ADHD AND SUBSTANCE USE

ADHD and substance use


What is ADHD?
Attention-deficit/hyperactivity disorder (ADHD), is a neurodevelopmental
disorder that is generally characterised by impairments in attention, and/or
hyperactivity and impulsivity.1 ADHD is considered a developmental disorder
as it is often diagnosed in childhood. Individual experiences of ADHD differ
from person to person. People with ADHD can experience different symptoms
at differing severities. ADHD can present as inattentive, hyperactive or a
combination of both.2 Inattentive symptoms of ADHD affect a person’s ability
to focus and sustain attention on tasks. Hyperactive presentations of ADHD
manifest in restlessness, agitation and inappropriately high levels of activity.
People with ADHD may also exhibit difficulty with impulse control, have
impulsive emotions and experience ‘executive dysfunction’, which results in
difficulty organising thoughts, planning and conceptualising time.
Internationally, there is a considerable amount of research on ADHD and
its connection with SUD and addiction. However, there is still much that
is unknown and undocumented about this relationship. Specifically, there
is a massive deficit in research on substance use and ADHD in women,
indigenous people and people of colour, disabled peoples and those
diagnosed in adulthood.

Aroreretini is a Māori word used in reference to having ADHD.


Its accepted translation is “attention goes to many things.”

People with ADHD are more likely to have used drugs


in their lifetime
Research shows that people with ADHD are more likely to have used drugs
or nicotine across their lifetime, compared to neurotypical people. Childhood
ADHD symptoms are also a predictor of subsequent illicit drug use in a 1. https://www.adhd.org.nz/what-is-
person’s lifetime.3 People experiencing worsening ADHD symptoms in their adhd.html

adolescence are also more likely to experience early onset of illicit drug use.4 2. https://www.adhd.org.nz/
3. https://academic.oup.com/jpepsy/
Early engagement in illicit substance use for people with ADHD is a predictor article/43/2/162/3977943
for escalating substance use, and sustained substance use in adulthood. It 4. https://psycnet.apa.org/buy/2010-
also increases the risk of substance use becoming problematic.5 15982-001
5. https://acamh.onlinelibrary.wiley.
The reasons why people with ADHD are more likely to engage in illicit drug com/doi/abs/10.1111/jcpp.12855
use have been theorised in research. Illicit drug use may stem from self- 6. https://sci-hub.se/https://link.
medication, behavioural disinhibition, impulsivity or sensation seeking, springer.com/article/10.1007/s00702-
020-02277-w
to name some posited ideas.6 However, there is no one single mechanism 7. https://pubmed.ncbi.nlm.nih.
that can explain the link between ADHD and drug use behaviours.7 gov/26289485/
NEURODIVERGENCE AND SUBSTANCE USE 9

Given that over 50% of people with childhood ADHD experience symptoms
persisting into adulthood, it is likely that risky or problematic substance use
behaviours initiated in a person’s early life may persist for many people with
ADHD.8
Despite not fully understanding this complex relationship, we know that ADHD 8. https://www.frontiersin.org/
journals/psychiatry/articles/10.3389/
has also been linked to other impulsive and addictive behaviours, including fpsyt.2023.1184023/full
gambling and cigarette smoking.9,10 There is limited literature focused on 9. https://link.springer.com/
substance use initiation, or general substance use in people with ADHD. The article/10.1007/s10899-009-9126-z
10. https://www.sciencedirect.
majority of research is focused on problematic substance use and SUD. This com/science/article/abs/pii/
may be a result of the high incidence of SUD in people with ADHD. S0890856709636972

People with ADHD are more likely to develop a


substance use disorder
Research suggests that about one in five people in the United States with SUD
have a comorbid diagnosis of ADHD.11 Other research has posited that over
50% of adults who have ADHD will meet the criteria for SUD at some point in
their lives.12 This is a considerably higher proportion than that of neurotypical 11. https://www.ncbi.nlm.
individuals, which is often cited as between 5–15%.13,14 This rate is also high nih.gov/pmc/articles/
PMC9859173/#:~:text=Current%20
compared to national figures. In New Zealand, 2006 data estimated the data%20indicate%20an%20
lifetime prevalence of SUD across the population was around 12.3%.15 ADHD,to%2062%25%20%5B18%5D
12. https://www.eurekalert.org/news-
Childhood ADHD diagnoses have been noted as an established risk factor releases/924775

for the development of SUD in adulthood. Wilens and Biederman (2005) 13. https://www.ncbi.nlm.nih.gov/pmc/
articles/PMC10430156/
conducted a meta-analysis of this topic in the literature and found a consensus
14. https://www.sciencedirect.
that ADHD is an antecedent disorder for SUD for children and adolescents.16 com/science/article/abs/pii/
Overall, there is considerable evidence for a correlation between ADHD S0376871620303343

diagnosis and SUD across the lifetime; however, these are cases where 15. https://www.health.govt.nz/
publications/te-rau-hinengaro-the-
diagnosis occurs early in life. The relationship between ADHD and SUD is less new-zealand-mental-health-survey
explored for adulthood diagnoses. 16. https://www.thelancet.com/
journals/lancet/article/PIIS0140-
People with ADHD are more likely to have severe or complex SUD, and greater 6736(05)66915-2/abstract

difficulty in responding to alcohol and drug interventions. Research has found 17. https://karger.com/ear/article-
abstract/26/4-5/201/134271/
that adulthood ADHD was associated with higher SUD severity, polysubstance Attention-Deficit-Hyperactivity-
use and psychopathological complexities.17 People with ADHD are also more Disorder-and?redirectedFrom=fulltext

likely to experience concurrent SUDs involving addiction to more than one 18. https://karger.com/ear/
article/26/4-5/179/134268/Attention-
drug.18 This further increases their risk of harm and overdose death. Deficit-Hyperactivity-Disorder-in
19. https://www.sciencedirect.
The reasons why people with ADHD are more likely to experience SUD and com/science/article/abs/pii/
complex SUD are not well understood. Some research suggests that the link S0006322314007860

between the two may be related to shared genetic features between ADHD 20. https://journals.lww.
com/addictiondisorders/
and SUD.19 Other research has suggested that it could be partially explained by abstract/2021/09000/managing_
the dysregulation of dopaminergic circuits.20 One prevalent theory is that SUD comorbid_attention_deficit_
hyperactivity.5.aspx
in people with ADHD could be a product of self-medication, particularly for 21. https://journals.lww.com/
individuals not receiving adequate diagnosis and/or treatment.21 nuclearmed/abstract/2014/02000/
searching_for_a_neurobiological_
basis_for.32.aspx
10 1 | LITERATURE SUMMARY: ADHD AND SUBSTANCE USE

People with ADHD are more likely to use


stimulant drugs
For a long time, there has been a suggested link between ADHD and illicit
stimulant use (e.g., methamphetamine, cocaine). Research has found that
ADHD is 2–6 times more common in people who use methamphetamine
compared to those who don’t.22 The relationship between undiagnosed ADHD
and methamphetamine use in particular has been explored in literature. A 2018
study found that over 10% of people using methamphetamine met the diagnostic
criteria for ADHD.23 Undiagnosed and unmanaged ADHD is likely to contribute to
regular methamphetamine use. One study of 269 people who regularly used
illicit stimulants found that 45% screened positive for adult ADHD.24
People with ADHD are also more likely to experience more severe effects of
stimulant substance use on their daily functioning. Studies by both Bordoloi and
Chandrashekar and Obermiet et al. showed that ADHD among people classified
as “chronic methamphetamine users” increased the frequency, persistence and
adverse effects on everyday functioning. They reported a lifetime prevalence of
ADHD in 20.8% of “chronic methamphetamine users.”25,26
Predictably, ADHD is also a risk factor for early onset of stimulant SUD, and
consequent harm from these drugs. Adults with ADHD have a more prolonged
course and severity of stimulant SUD. Research has also found that the
treatment of ADHD alone is insufficient in most ADHD adults with stimulant
SUD. Jaffe et al. also concluded that people who used methamphetamine and
had ADHD were more likely to leave treatment early and have greater
medication non-compliance than those without ADHD.27 People with ADHD
22. https://www.researchgate.net/
symptomology experiencing stimulant SUD also show higher rates of poor publication/337298326_ADHD_
functional capacity, higher rates of unemployment and significantly higher in_Adults_and_Its_Relation_with_ Me
thamphetamine_Use_National_ Data
neurocognitive symptoms than people using methamphetamine/other illicit 23. https://www.ncbi.nlm.nih.gov/
stimulants that do not have ADHD. pmc/articles/PMC6037581/
24. https://pubmed.ncbi.nlm.nih.gov/
One theory of why people with ADHD are at increased risk of stimulant use is 23227816/
that these drugs mediate many of the debilitating symptoms of unmanaged 25. https://www.researchgate.net/
ADHD.28 Drugs such as methamphetamine, amphetamine and cocaine act publication/337298326_ADHD_
in_Adults_and_Its_Relation_with_ Me
as modulators in similar ways to prescription psychostimulant treatment (i.e., thamphetamine_Use_National_ Data
methylphenidate) for ADHD symptoms. Whilst there are still considerable 26. https://pubmed.ncbi.nlm.nih.
gaps in knowledge regarding self-medication for ADHD symptoms in those gov/24018233/
27. https://pubmed.ncbi.nlm.nih.
without formal diagnosis, this concept is supported by pharmacological gov/16186089/
perspectives.29 People with ADHD have atypical action of neurotransmitters as 28. https://journals.lww.com/jonmd/
well as structural differences in the brain.30 Stimulant medications modulate abstract/2017/05000/attention_
deficit_hyperactivity_disorder.6.aspx
noradrenaline and dopamine, which help the brain of a person with ADHD to
29. https://www.ncbi.nlm.nih.gov/
work more ‘typically’. These medications improve focus, memory, executive pmc/articles/PMC6109107/
function and reduce the impact of hyperactivity. Illicit stimulants such as 30. https://jamanetwork.com/journals/
methamphetamine, amphetamine and cocaine have very similar mechanisms of jama/article-abstract/195386
31. https://onlinelibrary.wiley.com/
action to prescription psychostimulants and are likely to provide similar relief of doi/10.1155/2023/5574677
some symptoms of ADHD.31
NEURODIVERGENCE AND SUBSTANCE USE 11

People with ADHD also use non-stimulant drugs to


help manage symptoms
As people with ADHD are far more likely to meet the diagnostic criteria for
SUD compared to the neurotypical population, it is reasonable to assume that
individuals may also be at increased risk of SUD for non-stimulant substances
such as opioids, cannabis or alcohol.
In a study of people with opioid use disorder (OUD), the prevalence of ADHD
among patients undergoing opioid maintenance treatment was 20.3%.32 This is
considerably higher compared to the general adult ADHD prevalence, at around
2%.33 The study found that over 83% of individuals who had ADHD and OUD
had not been diagnosed prior to the study. As with other substances, it can be
speculated that opioids may be used by people with ADHD to help modulate
symptoms, especially if a person is not receiving ADHD treatment.34
Research has been done to investigate the link between ADHD and regular
cannabis use. People with ADHD are more likely to report cannabis use
compared to the general population.35 Research has suggested that regular
cannabis use may function as a way of managing symptoms and reducing 32. https://www.mdpi.com/1660-
4601/20/3/2534
executive dysfunction associated with ADHD. Cannabis may also help to 33. https://www.ncbi.nlm.nih.gov/pmc/
mitigate the effects of pharmacological treatment for ADHD, such as difficulty articles/PMC7916320/

sleeping and reduced appetite.29 Research has also shown that individuals 34. https://sci-hub.se/https://doi.
org/10.1159/000484240
with self-diagnosed ADHD may also opt for cannabis as a treatment for ADHD 35. https://journals.sagepub.com/doi/
symptoms rather than seeking traditional stimulant medication.36 Similarly, abs/10.1177/10870547211050949
an analysis of online forum discussions of ADHD and cannabis use found 36. https://www.tandfonline.com/doi/
abs/10.3109/16066359.2014.954556
that there was a large contingent of people suggesting that regular cannabis
37. https://journals.plos.org/
use helped modulate ADHD symptoms, particularly in the absence of other plosone/article?id=10.1371/journal.
pharmacological treatments.37 Some people report cannabis is effective in pone.0156614

improving attention and managing internal restlessness – symptoms that may 38. https://www.psychiatrist.com/
wp-content/uploads/2021/02/15355_
be particularly pronounced in unmedicated ADHD.38 nature-relationship-between-
attention-deficit-hyperactivity.pdf
Unlike with nicotine and illicit drugs, ADHD alone may not predict early initiation 39. https://www.sciencedirect.
of alcohol use or increased use in young people.39 Despite this, research com/science/article/abs/pii/
suggests that people with ADHD are also at higher risk of developing alcohol S0376871614019310
40. https://www.ncbi.nlm.nih.gov/
use disorder (AUD).40 Up to 43% of people with ADHD meet the criteria for pmc/articles/PMC4403287/
AUD. It is also suggested that around 20% of adults with AUD also have ADHD, 41. https://www.sciencedirect.
but the actual number is thought to be much higher, due to underdiagnosis of com/science/article/abs/pii/
S0149763421003092
ADHD.41 Those with late diagnosis and intervention for ADHD are more likely 42. https://academic.oup.com/alcalc/
to develop more serious problems with alcohol.42 The reasons for increased article/43/3/300/104462?login=false
risk of AUD in people with ADHD symptomology could be linked to their shared 43. https://www.psychiatrist.com/
wp-content/uploads/2021/02/15355_
genetic and neurobiological features. The self-medication hypothesis can also nature-relationship-between-
be applied to alcohol and ADHD; however, there is little research available on attention-deficit-hyperactivity.pdf

this topic.43
12 1 | LITERATURE SUMMARY: ADHD AND SUBSTANCE USE

Regular nicotine use may help manage the symptoms


of untreated ADHD
A link between ADHD symptomology and nicotine use has also been well
established in literature. Young people with ADHD are more likely to initiate
nicotine use than their neurotypical peers.44 Regular nicotine use and nicotine
dependance are more common in people with ADHD in both youth and
adulthood compared to neurotypical people.45 In fact, it is estimated that
more than 40% of people with ADHD are habitual cigarette smokers.46 The
connection between ADHD and nicotine use has also been posited to be a
form of self-medication for unmanaged symptoms, as nicotine increases the 44. https://www.tandfonline.com/doi/
availability of dopamine in the brain.40 abs/10.1080/1067828X.2012.756442
45. https://link.springer.com/
Some of the symptoms of unmanaged or poorly managed ADHD also article/10.1186/s11689-018-9260-y
predispose individuals to initiating smoking cigarettes and may make it 46. https://www.reb1rth.com/external/
studies/ADHD2.pdf
more difficult to stop. Positively, ADHD medication, particularly as an early
47. https://www.tandfonline.com/doi/
intervention, reduces the risk of early smoking initiation in young people.47 full/10.1080/10826084.2017.1334066

Substance use disorders in people with ADHD are


often complex
People with ADHD may be more likely to have severe or complex SUD and
greater difficulty in responding to interventions. As a result, treatment
for SUD in adults with ADHD must consider the complexities of these
comorbidities in order for people to respond effectively to interventions.48
To make the situation even more complex, up to 80% of people with ADHD
also meet the criteria for one or more other psychiatric disorders, such as
depression, anxiety, personality disorders or conduct disorders.49 This can
make it more difficult to treat SUD in people with ADHD.
People with ADHD are more likely to have earlier onset of SUD, a higher
likelihood of polydrug use and an increased risk of having concurrent SUDs
(addiction to more than one type of substance). They are also more likely to
have more hospitalisations and reported greater levels of suicidal behavior.
48. https://onlinelibrary.wiley.com/doi/
People with ADHD are less likely to adhere to SUD treatment.50 Part of the abs/10.1111/dar.12249
difficulty in treating SUD in people with ADHD is that substances are often 49. https://www.ncbi.nlm.nih.gov/pmc/
used to manage symptoms. Treatment for SUD alone is likely to be ineffective articles/PMC5567978/

for patients with untreated or poorly managed ADHD. However, the effective 50. https://www.ncbi.nlm.nih.gov/
pmc/articles/PMC5567978/
treatment of ADHD often results in improvements in other comorbid 51. https://www.ncbi.nlm.nih.gov/pmc/
conditions, including SUD.51 articles/PMC5567978/
NEURODIVERGENCE AND SUBSTANCE USE 13

It may also be difficult to diagnose ADHD in people with active SUD, due to
the overlapping symptomology of both conditions. There has been concern
that, due to this, ADHD may be misdiagnosed in people with SUD. However,
research has shown that in 95.3% of SUD patients that were diagnosed with
ADHD, the diagnosis was later confirmed during periods of abstinence.52
Alongside medication, CBT and other psychotherapeutic approaches to
SUD can be effective for people with ADHD.53 However, most of the current
approaches to behavioural and therapeutic interventions for SUD have been
developed for neurotypical individuals. People with ADHD take longer to
achieve recovery or stabilisation in SUD than neurotypical people, which is
52. https://www.sciencedirect.
not accounted for in traditional alcohol and other drug (AOD) interventions.54 com/science/article/abs/pii/
It is important to consider that people with ADHD may have different needs S0376871617304258

and more challenging presentations of SUD. Clinicians and AOD services 53. https://www.ncbi.nlm.nih.gov/pmc/
articles/PMC4414493/
must consider what services are most appropriate; these may be different to 54. https://www.ncbi.nlm.nih.gov/pmc/
what is recommended for neurotypical individuals. articles/PMC2676785/

Pharmacological ADHD treatments should be


prescribed to people with co-occurring ADHD and SUD
Internationally, there still appears to be reluctance within some medical
communities to prescribe stimulant medication to individuals with SUD.
Concerns stem from the idea that people with SUD may be more likely to abuse
or divert pharmaceutical stimulant medications. However, research does not
support this theory. In fact, young people that are treated appropriately with
stimulant medicines are less likely to develop SUD in their lifetimes than those
who are not.55 Other meta-analyses have found that in the vast majority of
studies, appropriate pharmacological treatment of ADHD is likely to reduce the
risk of SUD across a person’s lifetime and should be considered a protective
factor.56
Despite this, some prevailing medical perspectives still assert that
pharmacological ADHD treatment should only be provided after SUD has been
resolved. However, due to the difficulty in treating SUD when ADHD symptoms
are unmanaged, this is not recommended as best practice and may actually
inhibit a person’s ability to make positive progress in recovering from SUD.57 55. https://link.springer.com/article/
Where there are concerns that a person with co-occurring SUD and ADHD 10.2165/00023210-200519080
may misuse or divert medications, there are second-line treatments including -00001
56. https://www.ncbi.nlm.nih.gov/pmc/
long-acting stimulants (i.e., lisdexamfetamine) or non-stimulant treatments (i.e., articles/PMC2676785/
atomoxetine) that can be offered that pose less risk of diversion and misuse. 57. https://link.springer.com/article/
With appropriate clinical guidance and support, first-line stimulant treatment 10.2165/00023210-200519080
-00001
for ADHD is effective for most patients, even in the presence of a co-occurring 58. https://www.ncbi.nlm.nih.gov/pmc/
SUD.58 articles/PMC2676785/
14 1 | LITERATURE SUMMARY: ADHD AND SUBSTANCE USE

Early screening, diagnosis and treatment of ADHD


reduces the risk of developing SUD
If ADHD is screened for, diagnosed and treated early, it reduces the risk
of developing substance use issues both in youth and later in life.59 Youth
with ADHD that received appropriate and timely pharmacotherapy had an
85% reduction in risk for developing a SUD compared to those not receiving
treatment.60 This statistic highlights how crucial it is that screening and
diagnosis are accessible as widely as possible.
Research has been contradictory in the past regarding whether
psychostimulant medication treatment for ADHD could lead to substance
use and SUD later in life. Older literature had posited that psychostimulant
treatment increased the risk of future substance use in ADHD individuals;
however, this has since been largely disproven.61 More recent research has
shown that prescription psychostimulants do not act as a ‘gateway’ for
people with ADHD to access illicit substances or develop SUD.62 A meta-
analytic literature review conducted by Wilens et al. attempted to answer the
hypothesis that children/adolescents with ADHD receiving stimulant-based
treatment may result in an increased risk for SUD in adulthood.63 Based on
their analysis of the research, which included 674 medicated subjects and
360 unmedicated subjects (followed for four years), this hypothesis was 59. https://www.liebertpub.com/doi/
disproved. The results suggested that when ADHD is correctly diagnosed in abs/10.1089/cap.2005.15.751

childhood/adolescence and effectively managed, the likelihood of developing 60. https://publications.aap.org/


pediatrics/article-abstract/104/2/
SUDs is reduced. If a person does develop a SUD, effective treatment of e20/62430/Pharmacotherapy-of-
ADHD results in better outcomes in the management of SUD. Attention-deficit-Hyperactivity
61. https://www.psychiatrist.com/
Early diagnosis of ADHD also helps to ensure the right supports are in place read-pdf/8513/

to identify issues as they arise. Due to the common comorbidity of ADHD and 62. https://www.ncbi.nlm.nih.gov/pmc/
articles/PMC9097465/
other mental health and conduct disorders, this is particularly important.
63. https://pubmed.ncbi.nlm.nih.
This also allows for the early engagement with harm reduction approaches gov/12509574/
if substance use issues develop. Harm reduction education and strategies 64. https://onlinelibrary.wiley.
appear to be effective in reducing drug-related harm for people with ADHD com/doi/abs/10.1002/(SICI)1520-
6572(199821)4:1%3C53::AID-
using substances.64 SESS5%3E3.0.CO;2-9
65. https://www.ncbi.nlm.nih.gov/
It is important to acknowledge that the risks of missed diagnosis of ADHD pmc/articles/PMC9097465/
are broad. Untreated ADHD often results in increased risky behaviour, which 66. https://www.tandfonline.com/doi/
can result in serious harm. Untreated ADHD has been linked to increased risk abs/10.1207/s15374424jccp3504_8

of motor vehicle accidents, risky sexual behaviour and imprisonment.65,66,67 67. https://www.rnz.co.nz/
national/programmes/ninetonoon/
People with ADHD and SUD are more likely to die early; this is particularly audio/2018897811/people-with-adhd-
pronounced for people with untreated or unmanaged ADHD.68 Whilst there more-likely-to-enter-ciminal-justice-
system
is little literature on this, it is likely that these risks are pronounced for more 68. https://www.sciencedirect.
vulnerable groups such as Māori, people of colour and disabled people. com/science/article/pii/
S074054721400230X
NEURODIVERGENCE AND SUBSTANCE USE 15

There is little evidence to suggest the existence of adult-onset ADHD.69


However, missed diagnosis in childhood is relatively common and diagnosis
and screening of ADHD often misses people with atypical presentations and
manifestations of ADHD.70
Missed ADHD diagnosis is also very common in women and girls.71 Beyond
this, there are a plethora of reasons why an ADHD diagnosis may be missed
in childhood or youth, including barriers to access for diagnosis (financial,
social or structural) or misdiagnosis due to co-occurring mental illness. Due
to this, it is recommended that all people with SUD seeking treatment be 69. https://add.org/can-adhd-appear-
for-the-first-time-in-adulthood/
screened for ADHD.72 70. https://acamh.onlinelibrary.wiley.
Despite concerns that it may be difficult to diagnose ADHD in people with com/doi/10.1111/jcpp.13020
71. https://www.ncbi.nlm.nih.gov/pmc/
active SUD, it is recommended that a pragmatic approach is taken to articles/PMC10173330/
evaluate people for ADHD even where a person has not been abstinent.73 72. https://link.springer.com/
In the vast majority of cases, having an ADHD diagnosis helps the clinical article/10.1007/s11469-014-9496-z

approach to managing concurrent ADHD and SUD and results in better 73. https://www.sciencedirect.
com/science/article/abs/pii/
outcomes for individuals. S0376871617304258
16 1 | LITERATURE SUMMARY: ASD AND SUBSTANCE USE

ASD and substance use


What is ASD?
Autism spectrum disorder (ASD) is a neurological and developmental disorder
that affects how people interact with the world.74 Due to its generally early
onset (first two years of life), it is considered a developmental disorder. ASD
exists on a ‘spectrum,’ meaning that people experience it differently and have
different types and severity of symptoms.75 There is wide variation in how
symptoms of ASD present in different people.
ASD can affect a person’s ability to relate to others and can result in a
person having difficulty adjusting their behaviour to social situations. People
with ASD can find it difficult to interact with people and perceive social
cues. ASD can also affect a person’s ability to adjust to changes in their
environment and result in an increased likelihood of feeling overwhelmed 74. https://www.nimh.nih.gov/health/
topics/autism-spectrum-disorders-asd
or overstimulated. People with ASD may also be hypersensitive to certain 75. https://www.nimh.nih.gov/health/
stimuli in their environment and can find it difficult to regulate sensory topics/autism-spectrum-disorders-
input.76 asd#:~:text=Autism%20spectrum%20
disorder%20(ASD)%20is,first%20
It has been posited that people with ASD may be at higher risk of using 2%20years%20of%20life.
76. https://www.autism.org.uk/
substances as a form of self-medicating for their symptoms. There is some advice-and-guidance/topics/sensory-
research depicting the relationship between substance use and SUDs and differences/sensory-differences/all-
audiences
AUDs. However, there is contradicting evidence on this topic, and a large
77. https://www.education.govt.nz/
number of gaps in our understanding of why people with ASD use drugs. news/takiwatanga-in-your-own-time-
and-space/

Takiwātanga is a Māori word used to describe autism.


It means “in his/her/their own space and time”.77

We have a very limited understanding of the


relationship between ASD and substance use
There is a lack of consensus among researchers as to whether ASD is a risk
factor for substance use. Adhia et al. (2020) analysed research on alcohol
and cannabis use in individuals with ASD.78 They found that there was a
significant lack of research in this area, despite the potential for people
with ASD to be at increased risk of developing SUD. Another meta-analysis
by Huxley (2018) found that studies on the correlation between those
with intellectual disabilities and substance use were highly variable and
heterogenous.79 Sample numbers were also often small, making it difficult to
draw conclusions. 78. https://www.liebertpub.com/doi/
full/10.1089/aut.2019.0051
One posited relationship between ASD and substance use is that people with 79. https://www.tandfonline.com/doi/
ASD may be more likely to use alcohol or other drugs as a tool for coping. abs/10.1080/09687637.2018.1488949
NEURODIVERGENCE AND SUBSTANCE USE 17

Livingston (2021) surveyed autistic and non-autistic individuals about their


substance use.80 They found that autistic individuals were less likely to use
alcohol or other drugs compared to neurotypical individuals. However, their
qualitative research indicated that those individuals that did use alcohol or
other drugs reportedly did so to “manage behaviour” or “cope with mental
health”; these themes were less prevalent in non-autistic respondents.
This identified a potential area of concern, as these motivations for use
may be more likely to result in problematic or dependent substance use
behaviours. Further research has also shown that people with ASD are more
likely to report drinking alcohol as a coping mechanism or for social anxiety,
compared to those without ASD.81
A 2021 study found that substance use in people with diagnosed ASD was
estimated at 16% compared to 22% of neurotypical adults.82 However,
this study found that adults diagnosed with ASD were nine times more
likely to use drugs to manage ‘unwanted symptoms’ associated with ASD.
Adults with ASD were also three times more likely to use substances to
manage mental health symptoms, including anxiety, depression and suicidal
80. https://orca.cardiff.ac.uk/id/
thoughts. People with ASD reported some utility for substance use in eprint/143331/1/Livingston.%20
effectively managing symptoms, reducing sensory overload, or supporting in Substance%20use%20coping%20
and.pdf
social ‘masking’. 81. https://www.proquest.com/openvi
ew/37b017020053a2567132305b1dc
The most prevalent theme in the research on ASD and substance use is 9d716/1?pq-origsite=gscholar&cbl=18
that it is difficult to understand the relationship between the two. Research 750&diss=y

done on these groups is often conducted with methods developed for 82. Weir, E, Allison, C, & Baron-Cohen,
S. Understanding the substance use
neurotypical individuals. There is also the obvious problem of underdiagnosis of autistic adolescents and adults: a
of ASD, especially in women, people of colour and people with co-occurring mixed methods approach. The Lancet
Psychiatry (2021).
disabilities. The majority of studies recruit individuals who have a current
ASD diagnosis. This has likely resulted in underrepresentation of many
people with ASD in research.

People with ASD who use drugs may be at increased


risk of harmful substance use
Historically, research has suggested that SUD is lower in populations of
people with ASD compared to neurotypical people. A meta-analysis of 18
papers that looked at ASD and SUD found that, generally, SUD was lower in
the associated ASD populations examined.83 However, they also indicated
that most research was conducted in treatment populations, which makes it 83. https://pubmed.ncbi.nlm.nih.
gov/27559296/
difficult to establish whether people with ASD are less likely to have SUD, or
84. https://journals.sagepub.com/doi/
simply less likely to access treatment. Overall, the range of SUD occurrence abs/10.1177/1362361320910963
in people with ASD is large.84 ?journalCode=auta
18 1 | LITERATURE SUMMARY: ASD AND SUBSTANCE USE

Some studies claim the incidence could be as high as a 36% – much larger
than the overall estimate of a 12.3% lifetime prevalence of SUD in New
Zealand.85
Some research has outlined that ASD may be a risk factor for developing
SUD. A study of over 6,000 people with ASD described a link between ASD
and the development of SUD in people who initiated substance use.86 The
researchers found that people with ASD were at greater risk of mortality 85. https://www.health.govt.nz/
from overdose compared to those without ASD. Another study found that the publications/te-rau-hinengaro-the-
risk factors for SUD in people with ASD were six times higher than those of new-zealand-mental-health-survey
86. https://jamanetwork.com/
neurotypical people.87 Regardless of the actual incidence of SUD in people journals/jamapediatrics/article-
with ASD, it is clear that SUD may impact these individuals more severely abstract/2774700

than neurotypical people.88 On top of this, people with ASD often have fewer 87. https://www.gvhealth.org.au/wp-
content/uploads/2023/08/SYSTEM1.
protective factors for managing problematic substance use behaviours, pdf
including strong social support. 88. https://journals.sagepub.com/doi/
abs/10.1177/1362361320910963
Low mood in people with ASD may also be a motivator for engaging in ?journalCode=auta
substance use.89 Self-medication of mental health symptoms associated 89. https://link.springer.com/
article/10.1186/s12888-014-0264-1
with ASD can lead to worsening issues over time. Further, using substances
90. Weir, E, Allison, C, & Baron-Cohen,
for managing mental health symptoms presents a higher risk of escalating S. Understanding the substance use
into problematic substance use or SUD. Individuals diagnosed with ASD were of autistic adolescents and adults: a
mixed methods approach. The Lancet
also four times more likely to report vulnerability and risk associated with Psychiatry (2021).
substance use compared to neurotypical individuals.90 91. https://bmcpsychiatry.
biomedcentral.com/articles/10.1186/
One theory as to why there is increased risk of SUD for people with ASD is s12888-015-0541-7
due to the co-occurrence of ASD and other mental health diagnoses, such as 92. https://www.researchgate.net/
anxiety or depression.91 There is a complex intersection between ASD, mental profile/Patricia-Wijngaarden-Cremers/
publication/283736531_Addiction_
illness and SUD,92 which is not fully understood in the literature. However, and_Autism_Spectrum_Disorder/
it is well established that the co-occurrence of ASD and mental health links/574d49ad08ae061b3301f19b/
Addiction-and-Autism-Spectrum-
conditions such as anxiety or depression is a risk factor for problematic Disorder.pdf
substance use.

It may be challenging to diagnose SUD in people


with ASD
The common screening tools for SUD diagnosis are often not fit for purpose
for people with ASD. One study outlined that indicative scoring on the DSMV
questions for substance use indicates an ASSIST screening tool to be used
for assessing SUD. However, this tool assumes neurotypical experiences to
assess a person’s ‘baseline’ before their substance use, which may not relate
to people with ASD. Other screening tools rely on a person’s ability to assess
the impact of their substance use on others, which can be challenging for
some people with ASD.93
93. https://www.psych.theclinics.com/
This study also suggests that face-to-face screening for SUD may be challenging article/S0193-953X(20)30076-9/
for people with ASD. abstract
NEURODIVERGENCE AND SUBSTANCE USE 19

Equally, online tools may not provide clear instruction and make it difficult for
people to self-assess. Whatever screening tools are used, it is important that 94. https://www.gvhealth.org.au/wp-
content/uploads/2023/08/SYSTEM1.
clinicians are aware of the possible difficulties in assessing substance use in pdf
people with ASD. 95. https://pubmed.ncbi.nlm.nih.
gov/12850661/
Other research has found that there does not appear to be clinical consensus 96. https://bmcpsychiatry.
about the best way to screen for SUD in people with ASD. Diagnosis can biomedcentral.com/articles/10.1186/
s12888-015-0541-7
be challenging across many different screening tools.94 Unlike with other
psychiatric and mental health conditions, SUD is not often routinely screened
for in people with ASD.95 To add to this, SUD symptoms may manifest or present
differently in people with ASD.96 All of these things can make diagnosis of SUD in
people with ASD much more complex and can result in missed diagnosis.

Standard SUD interventions may not be effective for


people with ASD
Evidence shows that people with ASD and SUD may have a harder time
accessing AOD treatment and intervention. They may also have higher
attrition from SUD interventions/rehabilitation than neurotypical people. One
study found that the available treatments for SUD respond to the needs of
neurotypical individuals and are often not appropriate for people with ASD.97
Due to this, studies on ASD and SUD in traditional treatment facilities are likely
to not represent this population as a whole.
Access to, and uptake of addiction treatment in people with ASD is low.98
People with ASD are likely to have many more barriers to SUD treatment
compared to neurotypical people. Barriers can include perceived and
experienced stigma and lack of tailored services.99 During treatment, people
97. https://journals.sagepub.com/doi/
with ASD may also drop out due to ASD-related stressors in their lives as well pdf/10.1177/1178221819843291
as sensory overload in treatment settings.100 98. https://www.sciencedirect.
com/science/article/pii/
Medication assisted treatment (MAT) may also work differently for people S0010440X23000305
with ASD, including opioid substitution therapy (OST).101 There is little research 99. https://onlinelibrary.wiley.com/doi/
on the tolerance of MAT in people with ASD. It is theorised that it is possible full/10.1111/acer.14598
100. https://journals.sagepub.com/doi/
people with ASD would experience more sedating effects from OST or full/10.1177/11782218221085599
benzodiazepine MAT medicines, which is important to consider in treatment 101. https://link.springer.com/
planning.102 Currently there are no specific guidelines for prescribing MAT or article/10.1007/s00406-002-0379-0

other associated medicines for managing SUD in people with ASD. This can 102. https://www.cambridge.org/core/
journals/bjpsych-advances/article/
make SUD treatment complex for patients and clinicians alike. psychotropic-medication-prescribing-
in-people-with-autism-spectrum-
Individuals with ASD are also at a potential greater risk of substance-related disorders-with-and-without-
death than those without ASD. One study found that people with ASD were psychiatric-comorbidity/06891B1DE67
43CC72120331D9039A2DB
significantly more likely to die as a result of substance use, even when factors 103. https://www.ncbi.nlm.nih.gov/
of education, age and familial income were mediated for.103 pmc/articles/PMC5222913/
20 1 | LITERATURE SUMMARY: ASD AND SUBSTANCE USE

People with ASD may self-medicate with cannabis


Research has suggested that there has been an increase in individuals using
CBD and THC products for the treatment of ASD-related symptoms.104 Other
evidence suggests that THC and CBD use may increase the risk of developing
symptoms such as psychosis, irritability and loss of appetite in individuals with
ASD.
Another study examined the relationship between ASD and cannabis use.
The authors found that cannabis offered therapeutic improvement in several
aspects of life for people with ASD, such as reducing anxiety, irritability,
restlessness, aggression and depression.105 Due to the benefits of cannabis on
ASD, it is very conceivable that people may seek out cannabis illicitly where it
is medicinally inaccessible, as a means of self-medicating.
Online discussions of ASD and cannabis use include self-reports of using
cannabis to cope with symptoms of neurodivergence. One online forum thread
includes individual experiences of cannabis helping them focus on school or
work and reducing the overall negative symptoms associated with ASD.106 104. https://bmcpsychiatry.
biomedcentral.com/articles/10.1186/
Some people also shared their negative experiences with using cannabis to s12888-019-2259-4
address ASD symptoms, including finding it easy to ‘abuse’, having issues 105. https://www.scielo.br/j/trends/a/
with memory and it reducing their ability to ‘mask’ in social situations. A LBmJK6d8bqr5jVK6fp3CHXt/?lang=
en&utm_medium=social&utm_source
quick review of these personal experiences online shows that the benefits of =linktree&utm_campaign=autism+
cannabis can be significant for some individuals with ASD. Overwhelmingly, study+%26%23128269%3B
106. https://www.reddit.com/r/autism/
the personal reports discuss the utility of cannabis as a coping mechanism, comments/tpovyy/cannabis_and_
rather than something that is used for recreational purposes. autism/

People with ASD may be more likely to engage in


problematic drinking
Research has indicated a possible link between ASD and alcohol use
disorders (AUD). One study found that alcohol dependence occurred in 35%
of people surveyed with ASD, compared to 20% of those without ASD.107
Another study found that alcohol use traits in people with ASD occurred
107. https://source.washu.edu/2014/
in a ‘U’ shape. Non-drinking and hazardous drinking were both more likely 05/people-with-autistic-tendencies-
to occur in people with ASD compared to non-hazardous drinking.108 This vulnerable-to-alcohol-problems/#:~:
text=%E2%80%9CPeople%20with
finding fits with what we understand of ASD and substance use behaviours %20autistic%20traits%20can,
in general. increased%20risk%20for%20alcohol
%20dependence.%E2%80%9D
Despite this research, there is not a consensus about the risk of hazardous 108. https://www.ncbi.nlm.nih.gov/
drinking in people with ASD. Other studies suggest that people with ASD pmc/articles/PMC8264632/

may be less likely to engage in risky drinking behaviours compared to 109. https://www.sciencedirect.
com/science/article/abs/pii/
neurotypical individuals.109 S0306460320308017
NEURODIVERGENCE AND SUBSTANCE USE 21

Overall, there is not sufficient information on understanding the risk


of hazardous drinking in people with ASD, particularly in youth and
adolescence.110
There may be many reasons why people with ASD engage in hazardous
drinking. One study posited that alcohol may be used as a form of self-
medication to help alleviate some of the stressors (particularly social 110. https://www.liebertpub.com/doi/
stressors) in people with ASD.111 The study also found that alcohol use in full/10.1089/aut.2019.0051

people with ASD may be affected by sensory processing issues, including 111. https://www.sciencedirect.com/
science/article/pii/S0741832923002574
how it affects the sensory experiences of people with ASD.
22 1 | LITERATURE SUMMARY: NEURODIVERGENCE AND SUBSTANCE USE IN AOTEAROA

Neurodivergence and
substance use in Aotearoa
ADHD in Aotearoa New Zealand
In Aotearoa New Zealand data on both ADHD and ASD is not effectively
captured; we rely on estimates to understand the national prevalence
of these neurodivergences. One New Zealand study found that 0.6% of
the adult population was receiving ADHD pharmacological treatment.112
However, the actual estimate of ADHD prevalence in adults is 2.6%,
suggesting that our prescribing data does not reflect the actual number
of individuals with ADHD in New Zealand. This research also showed that
Māori are more likely to be under-prescribed ADHD medication, making up
only 10% of people receiving pharmacological treatment, despite being 17%
of the total New Zealand population.
Further, 2020 data from the Ministry of Health suggests that only 2.4% of
people reported an ADHD diagnosis.113 However, Australian data suggests
that the prevalence of ADHD is estimated to be 6–10% of children and
adolescents, and 2–6% of adults.114 Worldwide, the estimates of ADHD
prevalence have increased over the last decade. This is likely not due
to a greater actual prevalence of ADHD, but rather increased access to
diagnosis and more inclusive diagnostic criteria. Increases in prevalence
also likely represent better diagnosis of ADHD in previously underdiagnosed
populations, such as adults and women and girls. A recent American study
found that ADHD diagnosis in adulthood has increased by 123% over the
112. https://nzmj.org.nz/journal/
last 10 years.115 vol-137-no-1594/dispensing-of-
attention-deficit-hyperactivity-
In New Zealand, it is difficult to obtain an ADHD diagnosis, particularly for disorder-medications-for-adults-in-
adults.116 Children and adolescents can be diagnosed by a pediatrician or aotearoa-new-zealand

psychiatrist. Childhood diagnoses are more accessible via the public health 113. https://www.health.govt.nz/
information-releases/attention-deficit-
system than they are for adults — but wait times can still be significant. For hyperactivity-disorder-adhd
adults, ADHD can be diagnosed by a psychiatrist; it can also be diagnosed 114. https://www.ncbi.nlm.nih.gov/
by a clinical psychologist, but they are not able to prescribe pharmacological pmc/articles/PMC10363932/
115. https://www.psychiatry.org/news-
treatment. The public health diagnostic system for adult ADHD is room/apa-blogs/adhd-increasing-
significantly inaccessible – being described by some as “virtually impossible” among-adults#:~:text=ADHD%20
was%20four%20times%20
to obtain an appointment.117 Assessments by private psychiatrists in New more,123%25%20over%20the%20
Zealand are the most effective means of obtaining a diagnosis; however, same%20period

these are costly and wait times are often several months, and in some 116. https://www.adhd.org.nz/getting-
an-assessment-and-diagnosis-for-
cases over a year. A survey by ADHD New Zealand found that 33% of people adhd.html
who received a referral for ADHD assessment had given up waiting for an 117. https://www.rnz.co.nz/news/
appointment with a psychiatrist.118 national/489645/no-capacity-to-test-
adults-for-adhd-a-major-issue-gps-
Due to underdiagnosis, it is very likely that approximations of ADHD nz-head-says
118. https://www.adhd.org.nz/keen-to-
prevalence in New Zealand, particularly in adults, are underestimating the hear-what-other-adults-with-adhd-
actual numbers. said-in-our-survey.html
NEURODIVERGENCE AND SUBSTANCE USE 23

ASD in Aotearoa New Zealand


The majority of New Zealand research on ASD prevalence is focused on
diagnosis in children. One study found that ASD diagnoses for children in
New Zealand were made in 1.48 per 1,000 people aged 0–9.119 Of these
diagnoses, 87.4% occurred under the age of nine. Another study found that
the identification rate for ASD in eight-year-old New Zealanders was one in
102.120 Both studies found that ASD diagnoses were approximately four times
more common in males compared to females.
International research suggests that ASD prevalence is higher than these
New Zealand findings. Estimates range from one in 54 to one in 66 children
diagnosed with ASD.121 The estimated prevalence of ASD in New Zealand may
be undercounted by as much as 40%.122 International research corroborates
the findings that males are diagnosed with ASD considerably more than
females.
In New Zealand, assessing a child for ASD usually starts with a referral
from a GP and a diagnosis by a developmental pediatrician within the public
system.123 Waiting lists for childhood ASD diagnosis in New Zealand can be
several months and not all referrals are accepted. However, it is considerably
easier to get a diagnosis for ASD in early childhood compared to later in life.
ASD may also be diagnosed by qualified psychologists or psychiatrists via the
private healthcare system.
For adults, accessing an ASD diagnosis is much more difficult. Public 119. https://www.sciencedirect.
system referrals for adults with ASD are very rare, and a person is unlikely to com/science/article/abs/pii/
S1750946720300374?via%3Dihub
receive an appointment unless they have severe mental illness or significant 120. https://journals.sagepub.com/
intellectual disability.124 Referrals to qualified private psychiatrists or doi/10.1177/1362361320939329
psychologists are often the only option for adults seeking a diagnosis. Private 121. https://www.altogetherautism.org.
nz/autism-prevalence-in-new-zealand/
appointments are costly and wait times can be long. Despite this, research
122. https://journals.sagepub.com/
has shown that adults with ASD in New Zealand report satisfaction with doi/10.1177/1362361320939329
the diagnostic assessment stages. Unfortunately, they also report marked 123. https://www.whaikaha.govt.nz/
dissatisfaction with post-diagnostic support and report many unmet needs about-us/programmes-strategies-and-
studies/guidelines/nz-autism-guideline
related to their diagnosis.125 124. https://info.health.nz/mental-
health/mental-health-conditions/
There are some pharmacological treatments for ASD, but their efficacy autism-in-adults
remains largely up for debate.126 Clinical guidance in New Zealand suggests 125. https://link.springer.com/
that prescribing for ASD should be focused on identifying and relieving co- article/10.1007/s10803-021-04983-0

occurring mental health conditions or ADHD;127 however, these treatments 126. https://www.ncbi.nlm.nih.gov/
pmc/articles/PMC10294139/
are unlikely to affect the difficulties associated with the core characteristics 127. https://www.whaikaha.govt.nz/
of ASD. People with undiagnosed ASD may be less likely to receive assets/Autism-Guideline/Aotearoa-
New-Zealand-Autism-Guideline-Third-
appropriate pharmacological treatment for co-occurring mental health Edition.pdf
conditions.
24 1 | LITERATURE SUMMARY: NEURODIVERGENCE AND SUBSTANCE USE IN AOTEAROA

Substance use in Aotearoa New Zealand


Drug use and harm is a persistent problem in Aotearoa New Zealand. New
Zealand has comparably high levels of stimulant use to other parts of the
world, particularly in the use of methamphetamine. New Zealand is in the
top five countries worldwide in the consumption of methamphetamine
per capita.128 The highest levels of methamphetamine use across the
country are often in our poorest areas.129 Despite these high levels of
methamphetamine use, it is important to note that the 2012/13 New
Zealand Health Survey showed that 78% of people who used amphetamine
drugs used them less than monthly.
Aotearoa New Zealand has also seen an increase in drug-related deaths.
Between 2016 and 2023, 1,179 people died of accidental drug overdose.130
Concerningly, deaths from overdoses have increased over the last few
years. These overdose deaths only account for acute overdoses and do
not include deaths resulting in chronic harm from the use of drugs and
alcohol. The health burden of the chronic effects of drug use and SUD are
significant, both nationally and internationally.131
Despite growing concerns associated with increased drug use and harm in
Aotearoa New Zealand, our mental health and addictions services have not
significantly increased to respond to the need. A report from 2020/21 found
128. https://www.police.govt.nz/about-
that wait times for accessing addiction services had increased from five us/publication/methamphetamine-
years prior.132 There also remains a lack of services supporting people who new-zealand-what-currently-known-
about-harm-it-causes
are not at the high end of harm from substances, including non-abstinence 129. https://drugfoundation.org.nz/
harm reduction support, peer-support services and low-threshold assets/PageBlocks/Downloads/Drug-
community treatment options. use-in-Aotearoa-2022-23.pdf
130. https://drugfoundation.org.nz/
The burden of lack of access to diagnosis and treatment for ASD and assets/PageBlocks/Downloads/Drug-
overdoses-in-Aotearoa-2024.pdf
ADHD and support for substance use disproportionately impacts some
131. https://www.unodc.org/res/WDR-
communities. Māori have continually faced drug-related inequities, 2023/WDR23_Exsum_fin_DP.pdf
ultimately being three times more likely to die from drug-related 132. https://www.mhwc.govt.nz/
deaths than non-Māori.133 Māori are also 1.8 times more likely to use news-and-resources/te-huringa-
mental-health-and-addiction-service-
amphetamines, including methamphetamine, compared to non-Māori. It is monitoring-reports-2022/
also thought that the underdiagnosis of ASD and ADHD disproportionately 133. https://www.drugfoundation.
org.nz/news-media-and-events/
impacts Māori. Inequities in our healthcare system, including in mental new-report-shows-drug-approach-
health and addictions services, widen the gap in inequity for Māori continuing-to-cause-harm/

and often result in poorer overall health outcomes.134 There is very little 134. https://www.mhwc.govt.nz/
news-and-resources/te-huringa-
research on the intersectionality of SUD and neurodivergence for Māori; mental-health-and-addiction-service-
this is urgently needed to better understand what can be done to improve monitoring-reports-2022/

outcomes.
NEURODIVERGENCE AND SUBSTANCE USE 25

International practice
Both the number of diagnoses of ADHD and ASD and the incidence of
substance use disorders and substance use harm have increased over the
last decade.135, 136, 137 This has resulted in challenges for traditional mental
135. https://link.springer.com/
health and addiction services, particularly in responding to the unique article/10.1186/s12887-017-0971-0
needs of neurodivergent people with SUDs. Despite the growing number 136. https://acamh.onlinelibrary.wiley.
of neurodivergent people experiencing harm from substance use, there are com/doi/full/10.1111/jcpp.12941
137. https://iris.who.int/bitstream/han
some fantastic examples from across the globe of health systems working to dle/10665/377960/9789240096745-
innovatively address these needs. eng.pdf?sequence=1

Guidelines and tools


New clinical guidance for diagnosing ADHD that recognises the complexities
of diagnosis in atypical groups is a promising development. For example,
The Australasian ADHD Professionals Association (AADPA) has released
new clinical guidelines for screening, assessing and diagnosing ADHD.
These guidelines are working to bridge existing gaps for adult diagnosis and
diagnosis of other groups that are less likely to receive early intervention (i.e.,
girls and women). Although comprehensive, these guidelines provide a very
straightforward set of recommendations for clinicians.138
The guidelines provide a list of groups of people who are considered high risk
for ADHD; this is comprehensive and identifies groups that may otherwise be
missed by traditional screening practices. The guidelines recommend best-
practice screening processes for health professionals and emphasise the
importance of assessment of co-occurring conditions. The guidelines discuss
multi-modal treatment practices, including pharmaceutical, behavioural
and psychological interventions, as well as management considerations for
specific groups.
Similarly, the American Professional Society of ADHD and Related Disorders
(APSARD) is releasing diagnostic and treatment guidelines for ADHD in
adults this year (2024). Guidance focused specifically on adult ADHD may 138. https://adhdguideline.aadpa.
help to support those self-medicating with substances as a result of SUD. com.au/
26 1 | LITERATURE SUMMARY: NEURODIVERGENCE AND SUBSTANCE USE IN AOTEAROA

Alternative community treatment


Traditional SUD interventions may not be appropriate or effective for
neurodivergent people. As an alternative, there has been an increase in
the availability of community-based support services that offer promising
alternatives for neurodivergent people.
In Aotearoa New Zealand, Speed Freaks is a peer-based charity
organisation that focuses on walking and running groups to empower
people on a journey to recovering from SUD and mental illness. These
groups promote a safe environment, community, a physical outlet and an
important sense of belonging.139 Instead of traditional models for SUD peer
support (such as Alcoholics/Narcotics Anonymous), Speed Freaks centre
peer connection and community on physical movement.
For neurodivergent people, particularly those with ADHD, exercise has
been proven to support functional outcomes.140 The physical aspect of the
Speed Freaks model helps people to regulate symptoms they may have
otherwise self-medicated with drugs or alcohol. Whilst Speed Freaks is
open to anyone, they have a special focus on offering alternative support
for people with ADHD and other neurodiverse conditions, and have many
members with lived experience.
More generally, research is showing that peer-led models for community-
based programmes are bridging gaps left by traditional treatment services 139. https://speedfreaks.org.nz/

for people with a range of disabilities. A 2022 study found that peer- 140. https://journals.sagepub.com/doi/
abs/10.1177/1087054715627489
initiated programmes were very successful in overcoming existing barriers 141. https://www.mdpi.com/1660-
to SUD treatment for people with an array of disabilities.141 4601/19/15/9664

Adaptive treatment and support service models


There are also some promising examples of services working towards
creating adaptive AOD interventions for people with neurodivergent
conditions. Due to the complexities of the intersectionality between ADHD/
ASD and SUD, effective support must take into consideration the unique
needs of these groups. 142. https://www.addictionsnortheast.
com/wp-content/uploads/2020/09/
Addictions UK is working to create adaptive AOD services across the UK for Report-Neurodiversity-and-
Addictions-Final-Sept-2020-003-
neurodivergent people.142 ANE-website-vi.pdf
NEURODIVERGENCE AND SUBSTANCE USE 27

They have proposed four projects that aim to enhance support access and
improve experiences for this group, namely:

1 A welfare rights and legal service for those with addiction and
neurodivergent conditions.

2 A research project to expand and disseminate knowledge about


the connection between neurodiversity and addiction.

3 An online resource for neurodiverse people with addictions that


allows for communication, collaboration and mutual-aid support.

4 Training for addictions and health professionals on the complex


relationship between neurodiversity and SUD, and how to better
diagnose and manage people with these comorbidities.

If realised, these proposed projects are promising and could significantly


impact the way that neurodivergence is treated within addiction services
across the UK.
Equally, there has been more research done recently on the importance of
adapting SUD treatment models to work for people with ASD and ADHD.
A 2022 study found that CBT group treatment that is tailored specifically
for people with ASD was effective in improving symptoms of both ASD and
SUD.143 This adapted treatment focused on increasing the sense of control
in patients with co-occurring ASD and SUD. It also focused on getting
participants to generalise the interventions from CBT into their daily life,
which can sometimes be difficult for people with ASD. By recognising the
unique experiences of people with ASD, adapted CBT was effective in
mitigating problems from substance use.
There do not always need to be new services developed to address the needs
of neurodivergent people with SUD. Recent research focused on providing
regular education to therapists and health workers at a traditional SUD
support service to increase their competence in understanding of ASD.144
Regular education and group supervision for these workers was shown
to improve the outcomes for their patients with ASD. This research also
recognised that patients with co-occurring ASD and SUD needed more
support sessions compared to neurotypical patients, and therapy needed
to be more direct and individualised. Patients also benefited from more
general support in socialisation, understanding their ASD, and support in
coordinating other aspects of their lives (i.e., social assistance, housing,
medical care). 143. https://www.ncbi.nlm.nih.gov/
pmc/articles/PMC9019324/
There has also been research focused on specific SUD interventions for 144. https://www.ncbi.nlm.nih.gov/
people with ADHD. Tailored support models for treatment are most effective pmc/articles/PMC6472168/

for those with co-occurring ADHD and SUD.145 Interventions such as adapted 145. https://www.ncbi.nlm.nih.gov/
pmc/articles/PMC2676785/
structured skill training programmes may be effective supports for people 146. https://link.springer.com/
with ADHD.146 article/10.1007/s00406-002-0379-0
28 1 | LITERATURE SUMMARY: NEURODIVERGENCE AND SUBSTANCE USE IN AOTEAROA

Medication assisted treatment


Common clinical guidance has long suggested that psychostimulant ADHD
medicines are not prescribed to people experiencing active SUD, due to
the risk of misuse or diversion of these substances.147 This process involves
a person having to reach a period of stabilisation in their substance use
(usually predicated on full abstinence) before being assessed and treated
for ADHD.148 Historically, this has been the stance of much of the literature
around ADHD and SUD.
Despite these concerns, there is little actual evidence to suggest that
prescribing ADHD pharmacotherapy to people with SUD results in the
misuse or diversion of these medicines.149 The more common issues for
treating ADHD in people with SUD are related to possible increased
tolerance to these medicines if using illicit stimulants. If the person is still
actively using substances there is also an increased risk of harm from the
combination of these with prescribed psychostimulants, but this can be
managed clinically.150 Rather than misusing or diverting these medicines,
this research suggests that people with comorbid ADHD and SUD may have
greater difficulty with medication adherence.
Overall, current evidence suggests that to increase success of stabilisation
or recovery for people with concurrent SUD and ADHD, it is imperative that
ADHD symptoms are treated simultaneously.143 The majority of clinicians are
in agreement that treating ADHD supports a person’s ability to manage their
SUD and often aids in longer-term recovery.151 Withholding pharmacotherapy
from people can have adverse effects and ultimately result in greater
harm for the individual. There are alternative options for psychostimulant
treatment that are less likely to be misused, where there is genuine concern,
including extended-release preparations, such as lisdexamfetamine.
However, it must be stated that it can be difficult to diagnose ADHD when
there is a concurrent, active SUD.152 This is especially the case when the SUD 147. https://www.ncbi.nlm.nih.gov/
is severe. Active SUD and ADHD can share many similar characteristics, and pmc/articles/PMC2676785/

long-term use of substances can result in the development of ADHD-like 148. https://www.psychiatrist.com/
wp-content/uploads/2021/02/25835_
symptoms. For this reason, taking novel approaches to managing people substance-disorders-children-
with SUD and ADHD symptoms is imperative. adolescents-attention.pdf
149. https://jamanetwork.com/
More recently, there has been progress made in stimulant substitution journals/jamapsychiatry/article-
abstract/1691781
therapy (SST) for people with stimulant use disorders. SST is a form of
150. https://www.ncbi.nlm.nih.gov/
medication assisted treatment (MAT), where a medication with similar pmc/articles/PMC10075023/
effects to an illicit drug is used to relieve cravings and minimise harms 151. https://karger.com/ear/
caused by illicit drugs. The most prominent example of MAT is opioid article/26/4-5/223/134251/
International-Consensus-Statement-
substitution therapy (OST), where opioid agonists (i.e., methadone) are used for-the
to treat people with opioid use disorder. 152. https://legacy.psychiatrist.com/
read-pdf/4389/
NEURODIVERGENCE AND SUBSTANCE USE 29

In Canada, there has been an emergence of pilot studies that show promising
insights into the success of SST.153 These interventions use common ADHD
pharmacotherapies — methylphenidate and dexamphetamine to titrate
people off illicit stimulants such as cocaine or methamphetamine. Due to the
considerable number of people with ADHD who have a concurrent stimulant
use disorder, it is thought that SST may increase the likelihood of recovery
in undiagnosed individuals. Importantly, these SST practices don’t rely on a
person first receiving an ADHD diagnosis, as this process can be complex
when someone has severe SUD.
Additionally, an Australian study is currently investigating the use of
lisdexamfetamine (extended-release ADHD pharmacotherapy) as a
replacement for those with methamphetamine dependence.154 The
product, called Vyvanse, is formulated as delayed release, and can only be
metabolised through digestive processes. This reduces the misuse potential 153. https://doi.org/10.46747/
of the medicine, making wider access to it more feasible. Although ongoing, cfp.6802109
this study evidences that lisdexamfetamine could be highly beneficial 154. https://ndarc.med.unsw.edu.
au/project/randomised-double-
regarding both harm reduction for illicit stimulant use and co-occurring blind-placebo-controlled-study-
ADHD. lisdexamfetamine-treatment-0
2.
Community
experiences

To contextualise the findings of our literature summary, we


wanted to understand the unique perspectives of people with
living experience of ADHD and/or ASD and substance use.
In the absence of being able to conduct formal research on
this topic, the Drug Foundation held group and one-to-one
conversations with people connected with the organisation
to discuss their personal and professional experiences of
neurodivergence and substance use.
These conversations revealed that peoples’ experiences were often in line
with what we found in the literature. Prominent themes emerged, including
using substances to self-medicate, experiences of problematic substance
use, difficulty obtaining diagnosis, physical and mental comorbidities, and
stigma within health and social care systems. Those receiving appropriate
psychotherapeutic and/or pharmacological treatment shared significant
improvements to substance use behaviors and overall wellbeing and quality
of life.
We acknowledge the valuable input of these individuals as part of this report
and the importance of including diverse perspectives from an Aotearoa New
Zealand context. We hope in future to see qualitative academic research on
this topic to bolster the findings of this report.
NEURODIVERGENCE AND SUBSTANCE USE 31

Our process
Over the period of a few months, we engaged with individuals
and organisations that have insights and lived experience of
ASD and/or ADHD and substance use. We asked a variety of
structured questions focused on diagnosis and treatment of
neurodivergence, substance use, and experiences with AOD
interventions and wider health services.
The answers and insights from these engagements were summarised into
key themes, which we have used to inform the recommendations in section 3.
Although incredibly valuable, these insights are not representative of all
people with neurodivergence and substance use. We accept that there is a
natural sampling bias, as we only surveyed a small number of people already
engaged with the New Zealand Drug Foundation.

Summary of findings
These insights affirmed a connection between neurodivergence and
substance use. This connection proved multifaceted, highlighting the
heterogeneity of diverse, individual experience. We found all individuals
with neurodivergent conditions faced significant challenges in receiving
both diagnosis and support. Co-occurring mental health conditions were
present in all individuals, which complicated the diagnostic process further.
Individuals and organisations spoke to the limits of the health system in
Aotearoa New Zealand for those with neurodivergence and a history of
substance use or SUD.
32 2 | COMMUNITY EXPERIENCES: FINDINGS AND INSIGHTS

Findings & insights


Neurodivergence diagnosis and presentation
Half of the participants with lived experience had been diagnosed with
ADHD as an adult, and the other half were self-diagnosed with ADHD and
experiencing active symptoms; most of the latter had started the process to
obtain a diagnosis. A few participants also had formally diagnosed ASD or
reported ASD symptoms. Organisation representatives we spoke to worked
closely with those with neurodivergence and substance use problems.

1 All participants experienced difficulty accessing


diagnoses in both the public and private sectors
Issues highlighted were wait times, cost, stigma and system
navigation as barriers. One individual was told to “come back next
year” when seeking advice about a potential diagnosis, because
current wait times were too long.

2 All participants reported significant symptoms


associated with untreated ADHD or ASD
These symptoms included difficulty regulating emotion and
concentration, sensory sensitivities, and general difficulties with
communication and social settings. All participants had co-occurring
mental and/or physical conditions, most commonly anxiety,
depression, and PTSD. Most said these co-occurrences created
further barriers to diagnosis and support, contributing to experiences
of “not being taken seriously” or, in some cases, misdiagnosis.
Those formally diagnosed with ADHD were all medicated with
prescription psychostimulants. Other prescription medications
for co-occurring mental and physical conditions were typical and
atypical anti-depressants/anti-anxieties, opioids, anti-psychotics,
benzodiazepines and prescription cannabis.

3 Individuals with neurodivergence had current or


historical substance use
Substance use was primarily attributed to self-medication and
coping in these individuals. While some participants said that they
also used substances for recreation, the majority of regular use
was to manage challenging symptoms of ADHD and/or ASD. A
common substance for managing symptoms was cannabis — several
participants reported weekly or daily use. Other participants used
mushrooms, opioids, stimulants and benzodiazepines.
NEURODIVERGENCE AND SUBSTANCE USE 33

4 Several participants engaged in or had previously


engaged in hazardous or problematic substance use, or
had a diagnosed SUD
A few participants considered themselves as being in active addiction
or had a previous diagnosis of SUD. Almost all participants knew
of someone in their life that had a neurodivergent condition and
problematic substance use or addiction. Generally, participants felt
that access to pharmaceutical treatment for their neurodivergence
(particularly for ADHD) would reduce or completely eliminate their use
of illicit substances. Substance use and dependence is an evident lived
reality for many with neurodivergence.
According to the literature, health system experiences (including
AOD sectors and medical care) are key to understanding why those
with neurodivergent conditions are not receiving adequate support.
Predictably, no one we spoke to had had a satisfactory, fulfilling or
efficient experience with the healthcare sector in Aotearoa
New Zealand.

5 Participants felt that there was a general lack of tailored


approaches to supporting people with substance use/
SUD and neurodivergence
People felt that there was a general lack of cohesion and
centralisation of support services for those diagnosed with a
neurodivergent condition, particularly for ADHD. Once diagnosed,
people felt it was the responsibility of themselves and their family
to manage this. Outside of pharmacotherapy, participants did not
report any proactive support options to help manage their condition.
34 2 | COMMUNITY EXPERIENCES: FINDINGS AND INSIGHTS

6 Discrimination and stigmatisation by health services was


a reoccurring theme
Participants shared that they felt feelings of mistrust from the health
services they accessed. Some reflected on their experiences of being
labelled as a ‘drug seeker’ when attempting to access diagnosis for
neurodivergence (particularly ADHD). Other participants felt that
when they disclosed their illicit substance use, this became a barrier
to treatment.
Participants also shared that they felt unsafe sharing their illicit
substance use with clinicians for fear of this impacting their ability
to access treatment for both neurodivergence and other mental and
physical health conditions. Some participants had been told outright
by health professionals that they would not be able to be treated with 155. https://www.health.govt.
nz/regulation-legislation/
ADHD psychostimulants due to their history with substance use, medicines-control/controlled-
despite this not reflecting the actual prescribing regulations.155 drugs#:~:text=Treatment%20
of%20people%20dependent%20
Importantly, receiving a diagnosis of ADHD or ASD, with or without on%20controlled%20
drugs,-Only%20medical%20
pharmacotherapy treatment, was related to positive outcomes for practitioners&text=Section%20
individuals. 24%20of%20the%20Act,is%20a%20
gazetted%20practitioner%3B%20or

7 Receiving a diagnosis was described as “life-changing”


and “essential”
Themes of finding a “sense of self through diagnosis”, understanding
oneself in a different light and, importantly, enhancing networking
with others who share similar diagnosis were common in
participants. Many reported feeling validated in their experiences
after receiving a diagnosis. Interventions including CBT, other
therapy, lifestyle changes and medication were also described as
essential.
Psychostimulant medicines for ADHD were described as the
only thing that kept some participants functioning. People on
pharmacotherapy for ADHD reported significant improvements in
overall functioning and mental wellbeing. Participants reflected
on life before and after diagnosis and treatment, highlighting the
significant improvement in their overall quality of life and wellbeing.

8 Participants also found self-diagnosis to be beneficial to


their wellbeing
Participants who were yet to receive formal diagnosis still found
that understanding their symptoms as a product of neurodivergence
was a positive experience. This process also helped people to make
sense of their behaviours and coping mechanisms, including the
use of substances to self-medicate. This reflexive practice was an
important first step for all participants in acknowledging how their
neurodivergence affected they way they experienced the world
around them.
NEURODIVERGENCE AND SUBSTANCE USE 35

One of the most prominent themes that emerged across both living experience
and organisational participants was a consensus on the vital role diagnosis plays
in providing necessary support and fostering overall wellbeing. Pharmacotherapy,
therapeutic interventions (i.e., CBT) and support in implementing lifestyle changes were
all agreed to be essential for those with neurodivergent conditions.

Once diagnosed and medicated for ADHD, many people report having
9 greater control over their substance use
Further to the interviews conducted, an informal peer poll was run on the ADHD NZ
community for adults with ADHD Facebook page by a Drug Foundation staff member. The
poll was moderated by ADHD NZ. There were 582 responses to this poll and participants
were able to choose more than one answer. The question and response choices were as
follows:
“Which of the following applied to you once you were diagnosed and medicated for
ADHD?”
• I was able to reduce the amount of alcohol/illicit drugs I use, or I use them in a less risky way
• I completely stopped using alcohol and other drugs
• I stopped using other illicit drugs, but I still drink sometimes
• I find cannabis useful still, but otherwise have reduced my alcohol/drug use
• I haven’t been able to get medicated for ADHD because of my alcohol/drug use
• I haven’t been able to get an ADHD diagnosis (e.g., I can’t afford it)
• I feel more in control of all health behaviours (drinking, drugs, food, nicotine, gambling, etc.)
since getting diagnosed and medicated for ADHD
• ADHD medicine hasn’t helped me with alcohol/drug use
Almost half of the respondents reported feeling more in control of a variety of their
behaviours, including alcohol and drug use. Almost a quarter of people responded that they
were able to reduce the amount of alcohol and drugs they were using or use in a less risky
way. Given respondents were providing answers from their personal Facebook accounts,
it is possible that some people did not feel comfortable discussing their AOD use, so actual
numbers may differ if done in an anonymised survey.

Poll of people with ADHD

ADHD medicine hasn’t helped with alcohol/drug use 3%

Feel more in control of all health behaviours since


getting diagnosed and medicated for ADHD 44%

Haven’t been able to get ADHD diagnosis 12%

Have not been medicated for ADHD because of


0%
alcohol/drug use
Find cannabis useful still, but have reduced
9%
alcohol/other drug use

Stopped using illicit drugs, but still drink sometimes 2%

Completely stopped using alcohol/drugs 8%

Reduced amount of alcohol/drugs used 22%

0% 10% 20% 30% 40% 50%

% of respondents
3.
Recommendations

Insights gathered from both community conversations and the


wider body of research and literature provides a clear picture of
the challenges faced by those with ADHD and/or ASD and
co-occurring substance use/SUD.
Despite the pivotal role of diagnosis and treatment of
neurodivergent conditions, the process remains hindered
by costs, lengthy wait times, fear, stigma and a lack of
understanding within our health system.
There is still much that we do not know about neurodivergence and substance
use. This report acknowledges the need for robust and comprehensive research
in this area, particularly in a New Zealand context. What is clear from this
evidence is that there is a plethora of areas for improvement when it comes to
supporting individuals with ADHD and/or ASD and substance use problems.
NEURODIVERGENCE AND SUBSTANCE USE 37

1 Streamline Due to the common co-occurrence of ADHD


and SUD, ensuring accessibility of low-barrier,
screening of ADHD integrated ADHD screening in health services is
in individuals with imperative.
SUD or substance This includes screening through AOD services, mental health
services and residential AOD treatment and detox. Screening
harm in other settings where high-risk individuals may present, such
as prisons or corrections facilities, is also recommended. It is
important that screening occurs early in engagement with an
individual to ensure this is factored into their treatment plan.

2 Increase access to The current diagnostic process for ADHD is


heavily privatised.
ADHD diagnosis
More resource needs to be put into bolstering the public
diagnosis capacity, so that direct referrals from low-barrier
screening services can be made. Preferably, a system
change whereby patients could be diagnosed and treated
by specialised/authorised general practitioners rather
than psychiatrists would ease the burden on the current
systems and allow for better-integrated management of
comorbidities. However, it is important to note that this may
not be a complete solution, particularly for groups such as
people from low socio-economic backgrounds, Māori, Pacific
peoples and disabled individuals.

3 Introduce clinical Missed diagnosis of ASD or ADHD in childhood


is common. This is in part due to the diagnostic
guidelines criteria for these conditions being heavily oriented
for screening, around childhood presentations.
diagnosis and New Zealand should consider creating new guidance for the
diagnosis of neurodivergent conditions in adulthood, focusing
management of on the complications of comorbid conditions, including SUD
ADHD and ASD and mental illness. Developing clinical guidelines similar to the
recent work by AADPA would be beneficial.156
in adults 156. https://aadpa.com.au/guideline/

4 Tailor treatment Many AOD services in Aotearoa New Zealand


do not provide tailored treatment for people with
approaches in ADHD or ASD, despite this being imperative for
the AOD sector effective support.
for those with Tailored AOD support and intervention options across
New Zealand would greatly increase the success of these
neurodivergence programmes for neurodivergent individuals.
38 3 | RECOMMENDATIONS

5 Offer training on It is imperative that AOD clinicians and health


workers understand the unique relationship
neurodivergence between SUD and neurodivergence.
and substance use Regular education opportunities for the addictions workforce
for the addiction to learn about this is imperative in improving the experience of
neurodivergent people accessing services. Education modules
workforce that can be accessed by health professionals could help bridge
this gap in knowledge and reduce stigma.

6 Enhance More dedicated funding is needed for on-the-


ground community-led and peer-based support
community-based services for people with neurodivergence and
support SUD.
These groups are high value for cost and provide important
social and community networks and connection for people.
Community-based AOD supports may be even more
important for people with ADHD and/or ASD as they are more
likely to be flexible to their needs.

Ensure approaches It is important that all approaches to addressing ADHD


7
and ASD and substance use – including screening,
to neurodiversity diagnosis, support and treatment – consider the unique
and substance needs of Māori across a variety of different social and
regional contexts and are informed by an intersectional
use are equitable, approach.
culturally safe and
work for Māori

8 Avoid requiring In New Zealand it is possible to prescribe ADHD


psychostimulant medication to persons with SUD.
abstinence before
Whilst this is often a slightly more involved process than
providing ADHD prescribing to people without SUD, it is feasible. Access to
extended-release preparations may be recommended as a
pharmacotherapy first-line treatment where there is concern for misuse of these
in clients with SUD medicines.
It is vital to the successful support of people with co-occurring
ADHD and SUD that ADHD is able to be treated and managed
pharmacologically. Withholding psychostimulant medicine
where there is no significant clinical reason to do so can hinder
a person’s treatment significantly.
NEURODIVERGENCE AND SUBSTANCE USE 39

9 Fund and Lisdexamfetamine (Vyvanse) is a prodrug approved


for the treatment of ADHD.157
expand access to
Its extended-release formulation and the nature of it being
lisdexamfetamine a prodrug make it more difficult to use for the purpose of
getting high; this also reduces its diversion potential. For this
reason, lisdexamfetamine is thought to be a positive solution
for prescribing to people with SUD and ADHD where there
is a risk of misuse. The availability of lisdexamfetamine may
also make it more feasible for prescribing of this medicine
for ADHD to occur without special authority. A Pharmac
application for Vyvanse was submitted in 2021. In September
2024, Pharmac opened public consultation on the funding
proposal for lisdexamfetamine, closing September 26. We
await further updates on this progress.
157. https://pubmed.ncbi.nlm.nih.gov/35959655/

10 Trial novel Stimulant substitution therapy (SST) aims to


improve health outcomes for those with addiction to
approaches to stimulants, and reduce harms associated with the
harm reduction illicit drug market.
such as stimulant Illicit stimulant substances such as methamphetamine can
be titrated off and substituted with first-line ADHD treatment
substitution therapy such as dexamphetamine or methylphenidate. Importantly,
access to SST should not be tied to formal diagnosis of ADHD,
to reduce barriers.

11 Increase Invest in research to collect data on co-occurring


neurodivergent conditions, substance use and SUD
research on in New Zealand.
neurodivergence Particular attention should be paid to Māori with
and substance neurodivergence and co-occurring substance use, as this
is where the largest equity gap exists. This data can inform
use in Aotearoa future policy and provide valuable evidence for how to
approach these issues in an Aotearoa New Zealand context.
New Zealand

12 Tailor existing Services such as drug checking and needle


exchanges are important harm reduction services
harm reduction for people who use drugs.
approaches However, these may not always be tailored to people with
for those with neurodivergence, which can make these services inaccessible
to some of these people. Implements such as having sensory
neurodivergence spaces and providing information in ways more tailored to
people with neurodivergence would make these services more
accessible.
These recommendations
offer several areas in
which our health and
social systems can
improve the wellbeing of
neurodivergent people who
use drugs.
The proactive implementation of these recommendations is likely to have
long-term benefits for our healthcare systems and reduce the economic
burden of physical disease, chronic illness and mental illness.
Most importantly, these recommendations represent important opportunities
for change to reduce the stigma for neurodivergent people who use drugs in
Aotearoa New Zealand.
Neurodivergent people deserve equitable access to care, support and
compassion that enhances their ability to live long, happy and healthy lives.

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