powered by AS Health

Brightening Lives: A Supportive

Resource for Families with a Newly
Diagnosed Child Autism Spectrum
Disorder (ASD)
By Maram Alraygi
M.Ed., QBA
Welcome to Your Autism Journey:
A Parent’s Guide

A Supportive Resource for Families with a

Newly Diagnosed Child Autism
Spectrum Disorder (ASD)

Table of Contents
1. Understanding Autism

2. Next Steps After Diagnosis

3. Therapies & Interventions

4. Educational Support

5. Myths Vs. Facts

6. Daily Living Strategies

7. Building Communication Skills

8. Sensory Processing and Behavior Management

9. Community & Online Resources

10. Self-Care for Parents & Siblings

Compiled and written by Maram Alraygi, with the hope of providing

families with valuable support and guidance
This booklet was created to guide you during your journey with
your child who’s diagnosed with ASD, and it contains valuable
information and advice from trusted autism experts and parents
who’ve been in your shoes.

1. Understanding Autism
Autism Spectrum Disorder (ASD) is a neurological and developmental
disorder that affects communication, social interaction, and behavior. It
is characterized, to varying extents, by challenges in social interaction,
both verbal and nonverbal communication, and repetitive, inflexible
behaviors (Autism Speaks, 2015). It is necessary to note that each child
with autism is unique and their strengths and challenges will vary from
a child to another. Symptoms generally appear in the first two years of
life (Wicks-Nelson& Israel, 2015). According to the most updated Diag-
nostic and Statistical Manual of Mental Disorder, 5th Edition (DSM-5), an
autism diagnosis requires:

· At least six developmental and behavioral characteristics are

before the age of 3.

· The absence of other conditions that may be similar to ASD (Wicks-Nel-

son& Israel, 2015).
Diagnostic criteria:
The first two diagnostic criteria for ASD are:

1. Persistent deficits in social communication and interaction across

different environments, with difficulties (either currently or in the past)
in the following areas:

· Social-emotional reciprocity.
· Nonverbal communicative behaviors used for social interaction.
· Developing, maintaining, and understanding relationships.

2. Engaging in restricted and repetitive behaviors, interests, or activities,

with at least two of the following characteristics:

· Stereotyped or repetitive motor movements.

· Insistence on sameness or inflexible adherence to routines.
· Highly restricted, fixated interests.
· Hyper- or hyporeactivity to sensory input or unusual interest in sensory
aspects of the environment.

ASD symptoms may be currently observed or reported from the past,

but they should have been present early in life.

Remember:
· Autism is a specturm which means child with autism is unique and their strengths and
challenges will vary from a child to another.

· ASD is diagnosed in childhood and is a lifelong condition.

It is suggested by experts that your child gets genetic testing if he/she is diagnosed with
ASD as there are some genes that are associated with ASD are also linked to other health
conditions (Autism Speaks, 2014), such as Rett Syndrom, Fragile Syndrom. It is advised that
you follow up with a genetic counselor to get more information about genetic causes that
might be linked to ASD (Boston Medical Center, 2022). Understanding these genetic
connections can assist your child’s healthcare team in screening for any potential health
issues and providing timely treatment (Autism Speaks, 2014).

The levels of ASD severity

Each individual diagnosed with ASD is affected differently. Being diagnosed with ASD
does not mean that all children will display all features or even being identical in the
severity of ASD symptoms, and the level of challenges in daily life varies. The DSM-5
categorizes autism into three different levels based on the support needed,
considering communication skills and restrictive behaviors.

· Level One: Requiring Support: For example, a person may use full sentences but struggle
with back-and-forth conversations.

· Level Two: Requiring Substantial Support: For example, a person may use short
sentences, focus on limited topics, and have atypical body language or communication.

· Level Three: Requiring Very Substantial Support: For example, a person may have few or
no words, rarely initiate conversation, and use unusual methods to interact (Autism
Speaks, 2014).

An evaluation by healthcare professionals with different areas of expertise can be

essential in diagnosing autism and identifying related challenges, such as delays in motor
skills. Your child may have been assessed by:

· Neurodevelopmental pediatrician: A pediatrician with specialized training in treating

children with developmental, learning, or behavioral challenges.

· Pediatric Neurologist: A doctor who diagnoses and treats disorders affecting the brain.

· Child and Adolescent Psychiatrist: A doctor who diagnoses and treats mental,
emotional, and behavioral disorders.

· Child Psychologist: A professional trained to help individuals cope with life challenges
and mental health issues, as well as evaluate developmental concerns.
Physical and health challenges commonly associated with autism

There are a various physical and mental health conditions that often accompany ASD,
and understanding these conditions can help you recognize the signs. Caregivers and
professionals may sometimes mistakenly attribute certain challenges to the autism
diagnosis, while there is another treatable condition that could be the cause. These
health issues might be very common in individuals with ASD; however, it is important to
note that not all individuals with ASD will experience additional diagnoses.

These conditions, often referred to as comorbidities, include, but

are not limited to:
· Seizure disorder
· Gastrointestinal disorder
· Genetic Disorder
· Sleep problems
· Sensory processing disorder
· Pica
· Mental and behavioral health disorder (Autism Speaks, 2014)

It is significantly important to note that there is no blood test or medical exam

that can diagnose autism. ASD diagnosis is conducted through careful
observation of a child’s behavior, their developmental history, and input from
caregiver and others who interact regularly with the child (Autism Speaks, 2014).

Getting an ASD diagnosis can be highly beneficial, providing clarity and access
to important support and resources for both you and your child, including:

· Provides important insights into your child’s behavior and development.

· Explains the parenting challenges you've faced.
· Helps with motivating you to explore new strategies to support your child's
development.
· Helps you with creating a clear treatment plan for your child by identifying your child’s
strengths and challenges.
· Guiding effective interventions by highlighting areas of need and skill development.
· Helps with building connections with local and international resources as your child
grows.
· Enabling access to autism-specific services through early intervention programs or your
local school district (Autism Speaks, 2014).
2. Next Steps After Diagnosis
Having a child who newly is diagnosed with ASD marks a new chapter
in your family's life. For some families, it brings clarity after a long
search for answers, while others may feel surprised by the confirmation
of concerns.

Some families are released to know that their worries were valid, but
also feel sad or overwhelmed. Whatever feeling you experience,
remember that countless families around the world are on this journey
along with you, and support is always available. You're not alone.

Feeling overwhelmed is a natural and expected reaction. An autism

diagnosis often raises many questions about the future for your child,
yourself, and your family, leaving you wondering how to move forward
from here (Blue ABA Therapy, 2024). Regardless of how you feel about
the diagnosis, many parents share common concerns:

Worrying about your child’s future

Uncertainty about what to expect
Feeling unsure about how to help
Your child needs you, and you are the best person to offer them the support, love, and
care they require. You don’t need to know everything about autism to be the one who
understands your child best. Even if you feel unqualified or lack knowledge about autism,
you can do this. It may not always be easy, but there is a supportive community of parents
of individuals with autism who have been through this journey. If you find that sadness is
affecting your daily life or notice other signs of depression, consult your healthcare
provider for guidance and treatment. These symptoms may include:

· Weight changes
· Social withdrawal
· Sleep problems
· Low self-esteem
· Loss of interest in daily activities

While emotions vary among parents and family members, it's common for
many to experience sadness in the early stages after an autism diagnosis. This
time can be challenging for everyone in the family. After the diagnose have
been confirmed, you may wonder what comes next? As with any big news, it’s
normal to feel a mix of emotions. Make sure to take the time you need to fully
process your feelings and embracing them. As you are the caregiver of your
child, it's important to stay strong and steady for them, so allowing yourself this
time to find your footing is crucial. Taking time to check in with yourself and
address what's troubling you will not only benefit you but also support your
family. It is recommended to seek support from family, friends, or counseling
services (Autism Speaks, 2014).
· Stage 1: Awareness

· Stage 2: Acceptance

· Stage 3: Appreciation

· Stage 4: Action
To effectively support your child, consider these key steps:

Find Specialists: various therapies have proven effective in reducing the severity of
autism symptoms. Look for a neurodevelopmental pediatrician or child and adoles-
cent psychiatrist, occupational therapist (OT), speech therapist (SLT), and applied
behavior analysis (ABA) to support your child’s needs.

Create a Plan: develop a roadmap that includes therapy, school support, and home
strategies.

Join a support group: joining a support group and connecting with other parents
can provide emotional and practical support (Autism Speaks, 2014).
3. Therapies & Interventions
There is no medical treatment that cures the core symptoms of ASD.
However, autism can be managed through educational and therapeutic
interventions tailored to each child's individual needs (Boston Medical
Center, 2022).

Early intervention and support can make a significant impact on your

child’s growth and learning (NIMH, 2024). There are many effective
interventions for autism, and selecting a specific intervention should be
aligned with your child’s needs, and it should be designed specifically
to address the child deficit. Interventions should typically consist of
intensive, structured therapy delivered over multiple hours per week,
focusing on behavioral, developmental, and educational objectives

Reassessment is needed throughout the treatment process to find out

what works best with your child and what is needed to be adjusted to
each the plan goal..
The right combination depends on your child’s specific needs. Treatment
plan may include:

Applied Behavior Analysis (ABA): Helps develop communication,

social, and daily living skills. ABA approach helps reduce challenging
behaviors often seen in ASD by teaching more functional alternatives
(Autism Speaks, 2014).

Speech Language Therapy (SLT): Supports verbal, non-verbal, and

social communication and language skills.

Occupational Therapy (OT): Plays a crucial role, helps with sensory

processing, independence, self-regulation, soothing techniques, and
the development of motor skills.

Physical Therapy (PT): Assists with balance, coordination, and move-

ment.

Social Skills Training: Helps improve interactions with peers and

adults.

Remember:
· Start with an assessment to identify your child’s strengths and challenges to create a
personalized intervention plan.

· There is no specfic medical treatment or medication for ASD, rather, there is a theraputic
and educational intervention that depends on your child needs.

· It is helpful to understand which therapies are evidence-based and those that need
more research or are untested.

· It is helpful to understand about therapies that are evidence-based and those methodol-
ogies that are untested or need more research.
4. Educational Support
Here are key steps for an appropriate education:

Appropriate assessment: students of determination should receive an

assessment that helps with identifying their specific educational needs.
The assessment should be comprehensive and includes assessing
academic, social, and behavioral factors.

Parent involvement: Parents or guardians should be involved in all stages

of the IEP process, starting from initial evaluation to the creation and
periodic review of the plan (Autism Speaks, 2014).

Individualized Education Program (IEP): The IEP is tailored specifically to a

student’s unique needs, strengths, challenges and educational goals, and
provides the support that is needed. The IEP is created with the collabora-
tion between school staff and parents which ensure that the plan is
well-rounded and meets the student’s educational, social, and emotional
needs. Progress is assessed quarterly to make necessary adjustments
based on their changing needs.

Access Appropriate Services and Resources: students of determination

should have access to specialized services such as SLP, OT, ABA,
psychological support, and other relevant services based on their needs.

Remember:
Always advocate for your child’s needs and attend all school meetings prepared with questions
and goals
5. Myths Vs. Facts
Myth: Autism can be cured

Fact: Autism is a lifelong condition. Providing individualized intervention,

especially early intervention, can improve different skills which lead to life
independency.

Myth: individuals with ASD do not like to be touched

Fact: there are some individuals with ASD that may exhibit sensory sensi-
tivities, however, everyone is different. You may find a person with ASD who
may not like to be touched, on the other hand, you will find a person who
seeks deep pressure by hugging or using a blanket. Loud noises might be
overwhelming for some, but it is enjoyable for others. Pay attention to your
own child specific sensory needs and what are the likes and dislikes.

Myth: emotions or seeking connection to others is something that does not

interst individuals with ASD

Facts: indivduals with ASD have different feelings and emotions although
they communicate these feelings uniquely. Not verbalizing emotions or
feelings does not mean that these feelings are not felt or experinced by
indivduals with ASD. Communication has different forms that are used to
communicate with people around, such as, gestures, experssions, and
bodies. Try to find a way to connect with your child by building off of their
intersts and strenghts (Boston Medical Center, 2022).
6. Daily Living Strategies
Children with ASD might find it difficult to manage daily tasks, such as,
taking shower, getting dressed up, and brushing teeth. For this reason, it is
highly recommended to plan for these tasks and provide extra support to
incorporate these tasks into their daily routine. In fact, children with autism
often benefit from structures and routines. Below some tips that were
found helpful to use with children with ASD.

· Visual Schedules: Use pictures or charts to outline daily activities.

· Break into steps: break activities that need to be done into smaller steps
to support your child’s understanding.

· Transitions: Prepare your child in advance for changes in routine.

· Reinforcement: Use positive reinforcement to encourage good behavior.

· Social Stories: Explain social situations using simple, clear narratives.

Essential Measures to Keep Your Loved Ones Safe: As a parent or caregiver of
child with ASD, it is important to ensure the safety and well-being of children
with ASD. There are various precautions that can be taken at home or in public
places to create a secure environment and reduce the risk of accidents or harm.
Here are four critical safety measures that every parent should consider:

Secure your home: Home is where your child should feel safest, and this can be
done by taking steps to secure it is the first line of defense. Starting from
locking doors and windows to installing security systems, creating a childproof
environment is essential. Always ensure that doors and windows are locked
when not in use. You can use childproof locks on cabinets and dangerous areas.
Further, it will be beneficial if you can Install a security system with cameras or
alarms to monitor unusual activity.

Use a locating device: wearing a GPS locating device can help parents if their
child can be easily distracted and tends to wonder. These devices can be worn
on the body, such as wristbands or keychains, or even attached to clothing.
Such devices allow you to monitor your child’s location in real-time. You can
provide your child with a wearable GPS tracker, use smartphone apps with
location-sharing features, or consider child-specific devices that alert you if
they move too far.

Wearing an identification bracelet: To ensure your child safety, wearing

identification bracelet is essential tool to wear in public spaces or crowded
environments. These bracelets should include your child’s name, emergency
contact number, and medical information, ensuring that they can quickly be
identified in case of an emergency. Look for bracelet that are customizable
options that are durable, waterproof, and comfortable, and can be engraved
with critical information, including medical details like allergies or conditions
(e.g., "Diabetic" or "Non-verbal"), especially for children with specific medical
conditions or developmental disorders.

Teach Your Child to Swim: teaching your child to swim is one of the most
important life skills that your child can acquire. Further, learning to swim can
help provide your child confidence and enjoyment along with helping your
child stay safe around water. Early water safety education can save lives
(Autism Speaks, 2014).

Remember:
Consistency between home and school can improve learning and behavior
7. Building Communication Skills
Most children with ASD receive speech language therapy (SLT) which
address challenges that are faced in their communication skills. There
are some ASD children with limited speech or do not speak at all, and
others may only talk to communicate but not conversative. Below are
some helpful strategies to improve their communication skills (Autism
Speaks, 2014).

Use Simple Language: using short and clear phrases will help your
child understand and communicate better with you.

Alternative Communication Methods: using Picture Exchange Com-

munication System (PECS) or Augmentative and Alternative Communi-
cation (AAC) devices is recommended if your child speech and commu-
nication skills is limited.

Encourage Interaction: using play, songs, and games to promote

engagement is recommended to improve communication skills.

Remember:
Avoid overwhelming your child with too many questions at once.
8. Sensory Processing & Behavior
Management
Many children and adults with autism face difficulties processing
sensory, such as, processing movement, touch, smell, sight and sound.
Providing your child with sensory integration therapy sessions can
help with improving how their brain interprets and integrates this
information (Autism Speaks, 2014).

Below are some strategies that you can use at home to de-escalate
processing sensory problems (Autism Parenting Magazine, 2013):

Identify Triggers: observing if loud noises, bright lights, or certain

textures may cause distress can be a great strategy to help with identi-
fy triggers.

Provide Sensory Breaks: Designate a safe corner for your child with
items that interest him/her and help calming him down to go to when
feeling overwhelmed. Identifying tools can help calm your child when
facing difficulties with sensory processing, and use tools like rocking
chair, water, weighted blankets, fidget toys.

Behavior Strategies: seek help from a certified behavioral therapist to

help train you implementing behavioral strategies to reduce and avoid
problem behavior. It is recommended to ask for Functional Behavior
Assessments (FBA) and Behavior Intervention Plans (BIP) to manage
challenging behaviors.

Remember:
Keep a behavior journal to track patterns and identify triggers
9. Community & Online Resources
Local Support Groups: Find autism organizations in your area, such as,
The UAE Autism Society.

Websites: Psychiatry.org, Autism Speaks, World Health Organization,

WebMD (Webster, 2024).

Apps: Proloquo2Go (AAC app), Choice works (visual schedules), First

and then .

Remember:
Online forums and social media groups can be valuable for real-time advice
from other parents.
10. Self-Care for Parents & Siblings
Caring for a child diagnosed with ASD can be incredibly rewarding,
however, it requires efforts and time. It is critically important to make
sure that you are taking care of yourself first to be able to provide the
best care for your child (Autism Speaks, 2014).

Below are some techniques that were found helpful adjusting while
receiving the diagnosis for parents of children with ASD:

Take Breaks:

Seek Counseling:

Talk to someone:
10. Self-Care for Parents & Siblings
Below are some techniques that were found helpful adjusting while
receiving the diagnosis for parents of children with ASD:

Educate Siblings: Explain autism in a very simple way that they can
understand and learn how to play and build relationships with their
sibling with autism (Autism Speaks, 2014). Social stories, support
groups, special1:1 time with parents, and consoling are some of the
sibling support resources that are beneficial (Boston Medical Center,
2022).

Build a Support Network: Connect with local or remote communities,

family, friends, and other autism parents (Autism Speaks, 2014). Joining
such a support group can impact the life of families or caregivers as it
offers a safe and welcoming space to share experiences, gain insights
from others, and reduce feelings of isolation. These groups serve as
valuable sources of information and emotional support where families
can share similar experinces that creates a sense of belonging and
equips you with practical strategies to navigate the challenges of
autism care(RC7KC, 2024).

Remember:
Celebrate small milestones—every step forward is progress!
Final Words
“If more people understood autism, I believe that the young people who
are on the spectrum would feel more accepted and not so much as
outsiders” (Boston Medical Center, 2022).

Receiving the news of your child being diagnosed with ASD might not
be easy, however, remember that you are not alone in this journey. You
and your child can thrive and reach full potential when receiving the
right resources, support, and advocacy. Stay patient, stay informed, and
embrace the unique strengths your child brings to the world.

Your child is amazing, and so are you!

Reference:
(2013, April). Coping with sensory
overload: Tips for parents on the spectrum.

(2014). 100 day kit for newly diagnosed families of

young children.

(2022). Navigating autism spectrum disor-

der: A comprehensive guide for families.

. (2024, December 24).

Autism spectrum disorder.

Supporting families: A comprehensive

guide to navigating autism. LinkedIn.

8 steps to take after your child's

autism diagnosis.

Abnormal child and adolescent

psychology: DSM-5 update (8th ed.).
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