Understanding A Child’s Autism Diagnosis: A Parent’s or Caregiver’s Resource for Finding Answers

A diagnosis of autism in a child for parents is overwhelming. Add to that the confusion as to how your child's condition will fare on the spectrum, it is no wonder parents and caregivers will often feel alone and helpless.  But realize that there are resources, people and organizations that can help with the initial shock that you may be experiencing.  

First of All...

According to Dr. Jeremy Veenstra-VanderWeele - a resident New York Presbyterian Hospital Child and Psychiatry Specialist - there are few initial steps to take as you begin navigating your child's options, your family's decisions, and your own role in your child's future.

Have hope - Behavioral and educational interventions can make a big difference. Further, autism research is moving quickly, providing us new opportunities to help people with ASD.
Remember that your child is an individual. Your child is first and foremost his or her own unique person, then a child with strengths and difficulties, and only then a child with ASD. Receiving a diagnosis does not change the child you know and love.

Build a strong support system - Find people you can trust to support you as an individual, and then to support you as a parent of a child with autism. Acknowledge that this isn’t easy and give yourself credit for what you do.  Click here for tips on how to share the diagnosis with friends and extended family.

Find credible sources and resources in your community - You will hear many contradictory and unfounded pieces of information. Stand up for what you think are the needs of your child. Find professionals whom you trust and resources in which you have faith. Don’t be afraid to ask for help. Other parents can be important sources of information, but every child with ASD is different.

Enjoy each other - Do things that you and your child can enjoy together. While opportunities for learning are important, shared enjoyment is also important in a family.

Set goals - Set small, reasonable goals for your child and figure out how to accomplish them. Have ideas for next steps that aren’t miles down the road.

Make time for your partner - Set aside some time, even just a few minutes, to focus on each other and not the child. Listen to each other’s needs and perspectives as you consider what you will do for your child.

Have reasonable expectations for your child’s behavior - Do not let your child do things that you would not let another child of the same age do, such as biting people or climbing on counters. Do not punish, but interrupt quickly, be firm, and redirect, offering a distraction when necessary.

Build on your child and your family’s strengths - Help your child find things she or he loves and use that passion to build experience and/or skills. If your family is passionate about something like music, sports, or travel, find a niche for your child in that interest.

(Source: HealthMatters.)

Getting Started

The following are some resources that can cut through the chaos and clutter that parents and caregivers encounter, especially at the beginning of their challenging journey to finding answers and ways to support their newly diagnosed children.  It is worth visiting Autismspeaks.org, which has created information portals split up into age range and group.

Remember there are more resources available.  Feel free to scroll through to the bottom to get to lists of library resources you can borrow, of local organizations in York and GTA, and information on self-care for parents or caregivers who are currently experiencing the pressures of caring for a child or children with autism spectrum disorder.  There is help out there!  

Dealing with A Child's Autism Diagnosis: A Parent's Resource for Finding Answers (Updated Jan 2021)

List created by dantet

A list of introductory information on what to expect and how to prepare for the challenges and unique circumstances that accompany a child that has been diagnosed with autism spectrum disorder.

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Explaining Autism Spectrum Disorder - A Reading List for Children (and Their Parents/Caregivers)

List created by dantet

A reading list for parents/caregivers, siblings and extended family who support children diagnosed with Autism Spectrum Disorder (ASD) - helping, through clear and sympathetic stories and information, to explain what it is, the challenges faced, and how to face many of the unique day-to-day challenges ASD presents. A mix of fiction and non-fiction titles.

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Self-Care Resources and Tips for Parents and Caregivers (Online Resources)

WebMD - Self-Care Tips If Your Child Is on the Spectrum

Autismspeaks.org - Parent’s Guide to Autism (scroll to page 6)

Autismspeaks.org - More Self-Care Tips for parents and caregivers

External Programs, Organizations and Groups To Lean On (Local)

Ontario Autism Program - See what government programs and support services your child is qualified for...

Autism Ontario - York Region Chapter - Local services and professional networks located in and around York Region...

Ontario Autism Coalition - A massive portal to province-wide services and resources available to all those diagnosed with autism spectrum disorder, and dedicated to continued equitable access to said services and resources.