Autism: The Big Book Set of Help: Book Two: Co-occurring Disabilities

Co-Occurring Disabilities Breakdown & Topics of Interest

Co-occurring disabilities used to be called co-morbidities, or co-occurring conditions, but it’s preferrable to use more positive language. The previous two were using the old PFL modes of language that imply that autism is a morbidity or a condition – which it is not. This section is about the other disabilities (or secondary things you may want to investigate) that your child may have been diagnosed or linked with. Eg: ADHD, Dyslexia, Apraxia, OCD, PDA, language delay etc. These co-occurring disabilities listed below are just to get you started, it is by no means a complete list.

It is almost impossible, in my opinion, to be autistic and not have any co-occurring issues, eg: intersectionalled (as seen in book one). Because of the way our neuro-systems are wired, they can cause other issues. For example, I believe I have fibromyalgia because of my over abundance of synapses and my neurons working overtime to get messages to flow throughout my body; which is one theory of what autism is. Which I believe, in turn, causes a sort of short circuit in the wiring and tiring of the system as a whole – which causes me extreme pain in the form of fibromyalgia. But it’s a working theory that hasn’t been proven yet. I hypothesise that if we do have extra synapses and an abundance of circuits that aren’t trimmed at birth and through the subsequent years (as has been seen in more neurotypical individuals and groups of people); that this could possibly be the reason many of us are susceptible (or more prone to) having co-occurring disabilities. And is very much the reason that you cannot remove autism from the DSM or NDIA (as MP’s in Australia in 2023 want to do) or from any list of disabilities; as it is a part of who we are, it is a state of being, and (I believe) it is the reason we have other disabilities that affect our abilities, our functioning, and our quality of life.

Co-occurring disabilities are extremely helpful to identify issues that are causing problems for your child, or for yourself. Remember that autism is just a way of thinking, feeling, and experiencing the world (and can sometimes cause us disabling issues), but it’s our co-occurring disabilities that are (sometimes) the things that truly disable us. Some of these co-occurring disabilities are usually what you are thinking about and identifying when you are asking for help.

When you’re asking for help with your child because they refuse to do things – this might be because they have a PDA profile of autism, or executive functioning issues, or perhaps trauma, anxiety or PTSD/cPTSD. If your child is having trouble with mouth words- it might be apraxia or dyslexia, or situational non-speaking. If your child is not eating a range of foods; it might be ARFID, Anorexia, Sensory Processing Disorder or Misophonia – or all four combined, or something else entirely.

Some of these topics are discussed more often than others and are more common than others. Also – just because your child is autistic, it does not mean that they will have any of these disabilities, they just happen to co-occur with some people, and it is important to identify them; in order to find what the root cause of a certain behaviour or a certain issue they are struggling with – so you can find the correct tools and supports to help the autistic individual.

NOTE: ADHD (and some of the others listed here, like dyslexia) are just like autism; it is a neurological difference. There is much momentum in this area of research that points to both ADHD and autism being under one umbrella of a neurodifference. For more information, see the section in this book on ADHD or the section in book 5 about The Future. These disabilities are also not medical conditions or morbidities, they are neurodivergences.

TW: This section may contain a lot of words from PFL and the Medical model of disability, like ‘Disorder’ or ‘Condition’. I do not approve of these words, but to explain an acronym, the use of these words is unavoidable.

ADHD

Attention Deficit Hyperactivity Disorder (a lot of people believe this has been the wrong title ever since its inception). It again uses derogatory language deficit and disorder. Some people have mentioned renaming it, some of the suggestions follow: Hyperkinetic Syndrome, Attention Hyperactivity Difference, Neurological Difference of Interest Stimulated Focus and Movement Variance (ND: ISMV), that last one is mine for the sake of demonstrating the Shakespeare adage a rose by any other name: would still be a rose.

ADHD by any other name would still be ADHD, but identity matters, some people dislike the acronym, and others like it. But don’t forget, that it is still a neurological diagnosis that requires a lot of support. Undiagnosed or untreated ADHD can be impossible (as I’ve found), and it has impacted many aspects of my life. I didn’t have a name for my struggles, until fairly recently; but I definitely was, what I would call, ‘disordered’ throughout my life and especially my teen years and early 20’s. But I don’t like other people calling me disordered, as it feels judgemental and hurtful, and it gives me self-confidence issues, mental health issues, and offends me. Eg: I have the right to self-identify as I need but labelling me and all ADHD’ers as defective is insulting.

Most of us have a love /hate relationship with ADHD. We may love the variance of thoughts and where those thoughts can take us; we can be incredibly creative and inventive. But we can absolutely hate executive functioning and holding down a job can be impossible (it was for me). We can struggle in relationships to the point of giving up the idea of ever having one (also me). And we can have, or develop, real confidence or severe RSD problems due to constantly being told to ‘stop that’, ‘don’t do that’, ‘why can’t you?’, ‘do you have to?’, ‘not now’, ‘you’re so loud’, ‘what now?’, etc.

Adults and children identify as ADHD; it does not go away as they grow up. This is a type of neurodivergence and is a different way of thinking and experiencing; it is not a disease or something that can be cured. Some ADHD people prefer ADHDer and sometimes combined diagnosed people prefer AuDHD (autistic and ADHD). Ask the person what their preference is.

Some ADHD’ers prefer to see ADHD as a disorder; each to their own. This is because ADHD can affect lives in detrimental ways. Medication is sometimes the only lifeline available to them (although it doesn’t work for all), and they can feel truly disabled by their ADHD. Other’s think that their ADHD wouldn’t be as bad, or as disabling if society adapted to them more, and then others think that ADHD traits increase due to trauma. There is much still to be discussed and discovered about ADHD. The only certainty is that ADHD’ers need support and understanding.

VAST: a neuro divergence that has been identified as one that is ‘attained’, and not genetic, or you are not born with is: variable attention stimulus trait (VAST); it has similar traits to ADHD, see the section on ADHD for more info.

Many people believe that ADHD ‘traits’ (hyperactivity, inattention, having a lack of filter etc) should be viewed the same way that autism ‘traits’ are. Not as what ADHD is, but rather as a sign of trauma responses, that the ADHD person is outwardly displaying; due to their environment being harmful to them. The same way we see autistic ‘traits’ like meltdowns; as a sign that the NT world is causing harm. Eg: The ADHD person is displaying ‘behaviours’ that show the world that they are not coping and need support. That, If the world was supportive of ADHD and adapted, supported, and accommodated them, these outwards ‘displays’ of ADHD would no longer be visible.

But I can safely say (because I’ve experimented on myself), that even when the outside world has been shut out; I still have executive functioning issues that can paralyse me. I still need to medicate, or adapt, cope or simply survive some days with my ADHD; even if I stay at home all day and do nothing. I believe that it’s a mixture of both, but since I’m also autistic, I don’t know what struggle is due to being autistic, and which is ADHD. All I do know, is that when I accommodate myself better, and are aware of my triggers and support myself, all of my autistic and my ADHD ‘traits’ lessen. They become less noticeable, and I feel calmer. But they haven’t completely gone, they are still there in every fibre of my being; because my whole ‘fibre’ is multiply neurodivergent and will always be there. Just because they have lessened, doesn’t mean they are not simmering beneath the visible surface, waiting to jump out and take control.

For extra information about ADHD, try the ADDA website (Attention Deficit Disorder Association): www.add.org

If you want to read more about ADHD, "Very Well Mind do a weekly article on symptoms of ADHD, called Symptom Spotlight": www.verywellmind.com/adhd-symptoms-overview-4581798, including: Time blindness, Indecision, Lack of Focus, Stimming, Masking, Tics and Self-regulation and lots more. ADDitude Magazine also do articles about these types of things: www.additudemag.com.

I recommend caution when reading any articles about any diagnosis. Please do not take what is written and read into it; what isn’t there. Also, some articles can be poorly written or researched, and can skew views to different perspectives, which may be harmful and misinformed. Make sure any article has backed up their claims or information with links to reputable research (even if it is from an ADHD or autistic person: we are not infallible). And never take any suggestions as gospel. Please seek professional medical advice, and never experiment on your loved one using these articles as examples or lore. Most articles are to give you an extremely small glimpse into something that is extremely complex. NOTE: do not change your loved one’s diet, or experiment on them, based on one article. See the section on ARFID for more information.

Apps: There are a few apps and scheduling programs, that are thought to help ADHD’ers deal with things like executive functioning.

Checkout the YouTube Video: Why is it so hard to do Something That Should be Easy (29 March 2019) www.youtube.com/watch?v=Uo08uS904Rg

Also try the website and books by Dr Peg Dawson and Dr Richard Gaure at: www.smartbutscatteredkids.com

And the writings of Janae Elisabeth: Trauma Geek (available also on Facebook and through the website): www.traumageek.com Janae also does training. Trauma informed training can be imperative to a teacher or therapist that is trying to help either autistics or ADHD people.

Support Groups:

The Autism & ADHD Diaries:

www.facebook.com/autismadhddiaries

What ADHD-ers Want You to Know: Neurodiversity Education for Neurotypicals:

www.m.facebook.com/groups/497490931449853/

ADHD for Smart Ass Women:

www.facebook.com/groups/1541724249266515/

Autistic Adults with ADHD:

www.m.facebook.com/groups/autisticadultswithadhd/

UK Women with ADHD:

www.m.facebook.com/groups/ukwomenwithadhd/

Adult ADHD/ADD Support Group:

www.facebook.com/AdultADHDGroup/

ADDitude – ADHD Support Group for Parents:

www.facebook.com/groups/adhdparentsgroup/about/

Object Permanence

Do you buy multiples of something because of ‘object permanence?" This is usually described about a person’s perspective that if something isn’t seen – then it doesn’t exist.

I do this with shopping, if I can’t immediately see the jam, batteries, or tissues etc – I will buy more, even though I know I bought them 2 days ago. I seem to have a fear that I’m going to run out. I know COVID short supplies did this to everyone – but I’ve been doing it ever since I started shopping; about 30 years ago. It is very common with ADHD.

Face Blindness

Prosopagnosia. People with face blindness have trouble recognising people’s faces, they can sometimes distinguish parts of the face, but not necessarily the person as a whole. They use other features of the person to recognise them, eg; body type, hair colour, clothing style, etc. See this YouTube video for more information: I Have Face Blindness (Prosopagnosia) – Animation www.youtube.com/watch?app=desktop&v=KHxXe8F_5HQ&feature=youtu.be

If you have Aphantasia – check out the YouTube video: I have Aphantasia (you may too.… without realising it!) www.youtube.com/watch?v=ewsGmhAjjjI This is when you can’t visualise things in your brain, you can’t picture something in your mind’s eye when someone asks you to imagine xyz. This stops people with aphantasia from doing visualisation therapy; where the therapist or yoga instructor asks you to calm and relax by visualising your happy place, or calm beach, or a meadow. It also makes it difficult to read a fictional book and ‘picture’ the characters, the story and places. Sometimes these people might prefer reading instructional magazines or manuals, or comics, or graphic novels. Not everyone likes to read fiction; this is just one possible reason.

RSD

Rejection Sensitive Dysphoria. Please read the information about this, by William Dodson (4 April 2022) Additude Mag: free resource: understanding Rejection Sensitive Dysphoria from The Additude Store https://www.additudemag.com/download/rejection-sensitive-dysphoria-treatment-symptoms/?src=test. RSD is common amongst ADHDer’s (and is also often considered in the diagnostics of establishing whether someone is ADHD); along with inattentiveness/hyperfocus, impulsivity, hyperactivity, executive function etc. It causes huge emotions, from the feeling of being rejected, or perceived rejection.

Many people believe you can’t have RSD unless you are also ADHD. But I think this is a bit of baloney. I think RSD could be a standalone diagnosis one day. RSD has not been researched properly or extensively yet. But it does exist and is a very real problem for many of us. It requires a change of lens, change of language and approach, and change of the way we interact with someone with RSD.

RSD is not just about feelings of rejection. You can also be extremely hard on yourself, to the point of severe perfectionism, (OCD can co-exist and make this worse), and you can be extremely affected when it comes to trying new things or starting a project. Eg: you can become paralysed with fear, or executive functioning issues. You can think, that if it’s not perfect, and not likely to be exactly perfect; you shouldn’t even start it in the first place, and shouldn’t bother trying. The majority of my family suffer from varying degrees of RSD that affect our ability to get things done.

Example 1: In school, I couldn’t start an assignment until the night before it was due. This was due to undiagnosed ADHD and RSD. If I did it in one night, I had the excuse in my head that it can’t, and won’t, be perfect. There was no available time to fixate on perfection, redo it a million times, and second guess myself (like I have with these books). This was acceptable to my ADHD, RSD brain; because I knew it wasn’t perfect, and that was ok because no-one could get it perfect, in only one night. Therefore, I also couldn’t be hard on myself when the grade wasn’t perfect either because I knew it wasn’t perfect in the first place. Eg: knowing something could never be perfect, and I had no control over the outcome; really helped me. You may think that I had control, as I could’ve started it two weeks earlier; but no! This would’ve caused control to the point of fanaticism, and RSD to become a monolith to overcome once the returned grade wasn’t an A+ or High Distinction etc.

Example 2 of RSD in my family: If I tell my son that they shouldn’t say a certain swear word, because it’s not a nice word, he may take this as I don’t love them, or like them, and everything they say and do is wrong. In my case, I can cry all day, or just for hours, or I will dissect, replay, repeat and redo every part of the conversation for the next two to three days. I also have to be extremely careful how I talk to my boys, and how I approach delicate conversations. RSD also makes it hard for one of my boys with relating to his brother and other kids. He says (his brother) doesn’t love me, usually over something someone else might perceives as ‘simple’ (but it is not ‘simple’ to him), like: his brother needs 2 minutes before he can help him with something.… Not that he wasn’t going to help, but just that he needed to wait 2 minutes. My son seems to think this is a total rejection of him and everything about him, and it used to happen multiple times a day, with multiple people and incidents. He has grown a lot in recent years, and is learning to deal and cope with it, but even as an adult I also still feel these traits deeply, and I over correct at times.

RSD Traits: people pleasing, anxiety, hyper focussing on the negative, stress responses, sudden outbursts and defensive responses, difficulty maintaining relationships, fear of criticism, focussing on small details and perfectionism (fear of getting something wrong and being rejected because of it), hard on themselves.

Things that help: Some people have found that medication can help with RSD, but you would need to talk to the person and see if this is something they would want, and, of course, consult your paediatrician or doctor.

Allowing the child to feel their feelings, does help; especially if you validate them and support them with their preferred method of consolation and empathy.

Explain things to the person. Many people with RSD will become upset due to misunderstandings and misapprehensions (Milton’s: Double Empathy Problem makes this even harder). Clear direct communication is needed. Using a softer, affirming, and non-confrontational language, tone, and body language can help.

The word ‘No!’ can incite RSD in many cases. To help with this; you may need to explain that you still love your child, but sometimes you need to set boundaries. It does not mean that it’s a ‘no’ forever, or that you only ever say no to them, or that no is a bad word, or that it’s an arbitrary no. There is a reason for the no. Tell them (and justify) your reason for the no. If we do not hear a justification that makes sense to us, it can set off both PDA and RSD simultaneously.

Use affirmations and positive talk, or words; to lift your child’s esteem and self-confidence. Therapy like DBT can help; if it’s neuroaffirming; check out the book by Sonny Wise: The NeuroDivergent Friendly Workbook of DBT Skills or find a neuroaffirming therapist that knows DBT and autism, and RSD; this is a tall order and may be difficult to find. In the meantime, Sonny’s book can help.

Figuring out coping skills and how to deal with criticism and rejection is optimal. A psychologist may be able to help with some ideas, like; breathing exercises, or grounding techniques, and not reading into people’s language, tone and body language too much, and help to identify tools to build confidence and shut out the outside world (that is causing some of the RSD) and negativity, how to deal with negative self-image, and positive ways to deal with anger and frustration. But.… Only if they are neuroaffirming, and understand autism, RSD, PDA etc and do not gaslight you, or try to teach you NT skills or behaviours.

For parents: Please try to avoid criticism and punishments, or invalidation (through saying things like it’s not that bad, you took it the wrong way, you overreact). Most parents try gentle parenting methods, and natural consequences; where the consequences for doing certain things are obvious or easily explained and would naturally occur without you being involved (more on this later). Rewards may be very difficult for the RSD person. If they do not receive a reward for any reason, (or someone else receives one, and they do not), it will incite their RSD, sometimes to extreme levels. They will feel rejected and possibly take it very personally. If they do take it to extremes, it can lead to self-destructive behaviours, like drug or alcohol abuse, or self-harm. As seen in Book 3: rewards and any form of behaviourism is to be avoided with most autistic people (some like rewards, others find them extremely problematic).

Toxic positivity

RSD does not mean that you have to stay positive all the time. If you do, it leads to toxic positivity which is extremely harmful and can lead to depression and suicide. Toxic Positivity is when you only surround yourself with positive people, positive things, and positive thoughts. If you suddenly come into contact with anything negative, you can run the other way (or be in denial about it). This is like sticking your head in the sand and avoiding life.

Being a toxically positive person (with their constant need to avoid negative things) can make them susceptible to not coping if anything tiny (or negative) turns up. It also causes them to reject RSD people and anyone who says or does anything negative. Toxic positivity can also make you internalise all the negative things in your life, which is incredibly unhealthy; it can lead to ulcers, suicide, and heart attack. But it can also send you into denial; you may even begin to believe your own positivity mistruths and enter depression; as the weight and discomfort of maintaining a positive façade is too hard for anyone. You cannot avoid negativity forever, as you can’t have or appreciate anything positive; if you do not accept or believe that there is a negative to balance it. Toxic Positivity can also be a form of masking.

PDA

Pathological Demand Avoidance. This is described as avoiding everyday demands to the extreme. Many prefer to call it Persistent Desire for Autonomy. This new title says a lot about how to help them. If you think of it as autonomy – then to help them; you need to give them more choice and decisions. To counteract PDA; you stop demands, you change your language, and you give autonomy.

Difference between PDA and ODD – PDA is considered (by the community) a part of autism, and ODD is not. Some people will describe the difference as social understanding = ODD and non-social understanding =PDA. Eg: Traditional parenting methods can work with ODD, but you need a completely different approach with PDA.

Check out Kristy Forbes Facebook page and website for more information and training on PDA. And the section in this book on PDA for more.

ODD

Oppositional Defiant Disorder. As stated by Attitude Editors, 1 March 2022 (https://www.additudemag.com/what-is-oppositional-defiant-disorder/): Oppositional defiant disorder (ODD) is an extreme behaviour disorder defined by chronic aggression, frequent outbursts, defiance, and a tendency to irritate others. 40 percent of children with ADHD or ADD also show signs of ODD. To me, this just sounds like a trauma response, and lazy diagnostics.

To be diagnosed with this ‘disorder’, the child must exhibit extreme behaviours for more than 6 months. I don’t know about you, but if this was my child, I’d want help before they reached six months. Perhaps a psychologist/counsellor or psychiatrist could help until a full diagnosis is reached. Please speak to your psych, your GP, your health fund, (or your NDIA representative; if in Australia) to find out the best options for you and your child’s mental health needs.

Many people in the mental health field believe that ODD is not a real diagnosis, that it is used when people can’t be bothered/or don’t know what to look for, or don’t know how to help. Most ADHD and autistic people are PDA not ODD, if your child has been given a diagnosis of ODD, I’d investigate PDA to see if it is a better fit. Also, PDA actually has professionals that are willing to help, some professionals hear the acronym ODD and say they can’t help, or don’t know how to help. Look into a PDA program like the one by Kristy Forbes (www.kristyforbes.com.au).

GAD

Generalised Anxiety Disorder. Basically, what it says – it’s a general anxiety diagnosis that is diagnosed by severe ongoing anxiety- it’s diagnosed through the DSM-5. Sometimes autistic people are misdiagnosed with this instead of autism.

Situational non-speaking

Also known as Selective Mutism, but situational is preferred; as they do not choose to be non-speaking, it can’t be stopped or chosen, we have no control over it – so it is not ‘selected’.

This is described as a type of severe anxiety disorder, that affects the person’s ability to interact and/or engage. It can also be a trauma response, eg: freeze, out of the F responses: Fight, Flight, Flop, Freeze. They can often look frozen or absent. This disability is most often diagnosed in childhood but can affect a person at any age. I have heard of a few incidents where adults have been pulled over by the police (for random testing etc), but the driver becomes non-speaking, due to the severe anxiety around the incident. These drivers have then been arrested because they seem to be avoiding answering police questions.

If you or your child is situationally non-speaking, please look into signs or notes that identify the disability to police. I personally bought my Medical Alert Signs through Project Protect in Australia; but they are available from many places and can be personalised for each individual. They are great, because if you are pulled over by police -you can just point to it, for the officer to read and understand there might be a communication issue. Some deaf people do similar things. There are key rings, bracelets lanyards etc or something they can carry around with them, paperwork that can be easily accessible etc – things they can point to, or hand over the explanation for their non-speaking when they are in need.

The person can also use a phones texting ability or another AAC device. But if you are situationally non-speaking in these circumstances – often you are also unable to type or do much of anything (if it is a trauma response), pointing to something can be easier.

Many people with situational non-speaking prefer the company of people that will sit in comfortable silence with them. Always let your child know that it is perfectly fine to remain silent. Ask them if they like it when you talk to them about your day etc, or if they’d prefer silence and a cuddle, or companionable nearness etc. I’ve always preferred it when I know that a friend or family member is perfectly happy to just sit beside me and watch tv, or read a book, it’s sometimes nice to just be near people, you don’t need to constantly fill the silence with noise, and sometimes I find this overwhelming and stressful when people do. I’ve always loved the phrase be silent and even a wise man won’t know you’re a fool – it says a lot about the importance of listening as well.

OCD

Obsessive Compulsive Disorder. OCD can be debilitating and can ruin lives. People with habits or rituals do not have OCD – it is more complex than that. Please see a professional if you think you, or your child suffers from OCD, it can be treated, but there is no known cure.

RDS

Reward Deficiency Syndrome. According to the research; Kenneth Blum first coined this term in 1995 – Accurate Education Clinic (www.accurateclinic.com/accurate-education-reward-deficiency-syndrome-rds-addiction/) defines it as: A brain reward genetic dissatisfaction or impairment that results in aberrant pleasure seeking behavior that includes drugs, excessive food, sex, gaming/gambling and other behaviors.

Also see the article by Marc Lewis (19 August 2013) Psychology Today: When the thrill is gone: Reward Deficiency Syndrome www.psychologytoday.com/au/blog/addicted-brains/201308/when-the-thrill-is-gone-reward-deficiency-syndrome

This syndrome explains why we might struggle with executive dysfunction, boredom, addictions or OCD, transitions, intense hobbies, and other things that society deems inappropriate. It can also explain why one reward might work the once; but then we lose interest or learn to hate rewards. Because one reward will never sustain our dopamine levels or hold our interest, and often teaches us very bad habits. You would need to constantly increase the size and type of reward in order to sustain our dopamine and not send us into withdrawal or anger.

D2 Receptors in the brain are responsible for supplying enough dopamine for us to be focussed, have a good memory, motor control and motivation etc. Many researchers believe that people who are ADHD or autistic (and some OCD people) do not have as many D2 receptors as NT people do. This lessons the amount of dopamine circulating around inside of us. In order to produce more of the dopamine, we need to become motivated, happy, emotionally regulated etc; we sometimes need a lot of help to get to a point where our dopamine levels reach an optimum point to help instead of hinder. When our dopamine drops; it stops us from focussing, from doing, from achieving.

Unfortunately, sometimes our need to increase our dopamine, requires a more aggressive medium than NT’s, or we need to use more external methods and tools. This means that we can turn to things that can help us to produce more dopamine, but they may be deemed by society as ‘age inappropriate’, addictive or harmful. Eg: video games, alcohol, medications, food, sensory seeking tools, computers and tablets, high impact movies, cartoons or comedy movies that produce happy emotions, squishy soft toys etc, or sometimes we even turn to arguing, competitions or high impact sports. We turn to whatever will increase this dopamine to help us to relax, focus or do something. I’ve obviously listed my favourite go to things – but they can be anything that your autistic loved one, loves, and is excited or happy about.

If you limit or remove these things (the ones that we get the most dopamine from); they need to be replaced with something else that will still produce the same dopamine output. If not; that’s when you see us as angry, lazy, bored, unmotivated etc. Never limit our access to these things (except the drugs/alcohol etc – they are not good, and require specialist help to limit). Please be understanding in our need to seek these things out. We are not like the average person who gets the same dopamine rush from just being alive and breathing. We need something more, more help, more assistance, just MORE! This is why we love our hobbies; they can give us this dopamine rush as well. Please be careful when introducing any reward system; check out Alfie Kohn Punished by Rewards before you do, but also be aware that any reward is likely to backfire, and we may become addicted to rewards, or become completely noncompliant (I know I did).

Skin Picking or Hair Pulling

Skin Picking (Excoriation) or Hair Pulling (Trichotillomania) are very common, it can be a form of stimming. Both tend to affect women more than men; with women taking up 75% of cases for Skin picking and a huge 80-90% for Hair pulling. It can be closely linked to OCD and is part of the DSM5.

I have Excoriation, and have had it, I think, for my whole life (because I can’t remember a time that I didn’t do it). I pick my finger cuticles. I use fidget rings, and a necklace, and play with my phone a lot to try to stop it. But I love the list of (162) suggestions to be found on the website: The TLC Foundation: for body-focused repetitive behaviors, and the article: the great big list of favorite fiddles or stimulation substitutes and behavioral blockers for BFRB’s www.bfrb.org/blog/1-blog/679-the-great-big-list-of-favorite-fiddles This article of ideas can also help with ideas for some stimming activities.

Holding a weight can help – I find that my excoriation is due to me hating the imperfect feeling of a scab, a loose bit of skin, a stray cuticle etc – I cannot stop picking until the bit on my finger that ‘doesn’t feel quite right’ is fixed and feels right again. If your child picks due to the feeling of imperfections; regular professional manicures may help; but only if they can stand being touched by others and/or the sensory overwhelm that salons can cause. If not; perhaps learning how to do manicures at home for themselves may help. Try YouTube ‘how to’ videos, and manicure at home kits.

Moleskin Bandages can be fun to put on and pick off too – if you pick due to sensory need that picking gives. And Picky Pumice stones: www.pickypumicestone.com. There are also things called Picking Palettes. These are little plastic sticky bits of colour that you put on a palette - then peel it off, like pulling off drops of paint/or picking at a cuticle; but they seem to be only available on Etsy at this stage.

There are also things called Calm Strips – they are strips of textured stickers that you put on a keyring or on the back of phones – that you can scratch or pick at (www.calmstrips.com).

Nail or cuticle biting is also an issue: try a nail polish designed to taste bad (only if your child agrees – this should never be forced or inflicted). A brand like Revitanail Stop Bite & Protect or the article by Marquaysa Battle et al (9 March 2022) 19 Helpful Products for Anyone Trying to Stop Biting their Nails BuzzFeed: www.buzzfeed.com/marquaysa/products-stop-biting-nails

Something like a Monkey Noodle sensory toy (long thin rubbery noodle, available from sensory stores) may help with the need to twirl something around your fingers, instead of twirling hair.

DCD

Developmental Co-ordination Disorder or Dyspraxia. A neurodevelopmental disability with; movement, sequencing, planning, processing, and coordination. This is a separate disability that the child is usually born with, there are Occupational and Physical therapy that can help, but there is no known cure. This can be a co-occurring disability in conjunction to ADHD or autism. Dyspraxia is the partial loss of the ability to do the above-mentioned things, Apraxia is the term to describe the complete loss of ability to do these things; these terms are often seen as a ‘severity’ scale.

CAS

Dyspraxia or Apraxia of speech is specifically related to producing speech sounds and will require a Speech Pathologist to diagnose. There is also a separate type of Dyspraxia that can be caused by stroke, brain injury or infections. If your child has any speech delays, see a speech pathologist to diagnose properly.

Apraxia of speech is one of the biggest/ most common reasons why non-speaking autistics cannot use mouth words. If you suspect Apraxia, you may want to see a Speech Therapist for therapy; but make sure that they understand it is not an issue with comprehension or intelligence. And that you want all options of communication to be taught to your child. Not just ‘speech’, eg: mouth words. Find an SLP that is willing and able to teach AAC, sign language, and Spelling to Communicate (S2C) or RPM (Rapid Prompting Method) or any other tool or method that can help them to learn a way to communicate that suit them as an individual.

I have mentioned this in the section for non-speaking autistics (AAC), but it is important that you and your child are never forced into ‘speech only’ therapy. Some therapists will tell you that if other methods are used – then your child won’t be ‘motivated’ to use mouth words. This is discrimination and is withholding of education – which is wrong! It is telling the child that we only value mouth words in society, and if they can’t learn to use verbal language then they will be expected to stay silent for the rest of their lives – so so so so so WRONG! It has also been proven that giving children multiple tools to communicate actually increases language and does not hinder the use of mouth words at all. Check out the Assistive Ware website for just one example of this: https://www.assistiveware.com/learn-aac/roadblock-aac-will-stop-a-person-from-learning-to-speak

Accessing therapies for speech early on, can be extremely important to a child and their future development. Some may learn when they are ready, but it’s best to get a professional opinion if you are worried. There are many different things that can be delaying your child’s speech, these include, (but are not limited to): Tongue tie (a surgeon and laser surgery is usually required to cut the under section of the tongue to fix this issue), also issues with palate and mouth (or even enlarged tonsils), hearing loss, Auditory Processing Disorder, Expressive or Receptive language ‘disorders’, Intellectual disability, psychosocial deprivation (doesn’t get enough time talking to people), stuttering, situational non-speaking, cleft lip or palate, Orofacial Myofunctional Disorders (OMD’s – atypical movements of the face and mouth), Dysarthria (this is caused by brain injury that causes muscle weakness). Or perhaps they just don’t want to talk; I sometimes refused to talk, because I didn’t want to, or had nothing to say and people thought I was shy or cognitively impaired … I was listening, observing, and learning instead.

Remember: if your child is struggling to ‘talk’ it is not the end of the world. Finding out what