Newly Diagnosed with Autism

NEWLY DIAGNOSED WITH AUTISM

Published on Interactive Autism Network: Undated
Revised and Republished on AIDE Canada: September 4, 2019

Parents of children who have just been diagnosed with Autism Spectrum Disorder (ASD) often
feel like they have been handed a ticket to a different and unexpected journey but are not quite
sure how to proceed. In this section, we address some of the issues that may be on the minds of
parents in this situation.

YOU ARE NOT ALONE

A report of the National Autism Spectrum Disorder Surveillance System estimates that 1 in 66
Canadian children aged 5-17 have an ASD diagnosis. 1 This means that you are not alone. There are many
families in Canada and across the world raising an autistic child.

Each child on the autism spectrum has his/her strengths and challenges. As you read and learn, you will begin
to get a sense of where your own child fits on the autism spectrum—not just overall—but with
regard to different aspects like social understanding, language, repetitive behaviors, motor skills,
sensory issues, etc. One child with autism may differ markedly from another. So, it is important to
identify and celebrate their unique strengths, and build on them. Get to know your child’s
challenges and make providing targeted interventions your top priority.

GETTING A HANDLE ON IT: EDUCATING YOURSELF

In the case of a newly-diagnosed child, this process usually begins with educating yourself about autism, something    you may have begun before your child ever received a formal label. There are many books, articles, DVDs, workshops, and conferences about autism, not to mention websites like this one.

The more you learn, the more empowered you will be to make wise decisions, educate others and
advocate for your child and your family.

Please keep in mind, as you take on this task, that you cannot possibly learn everything all at
once. Take your time, and recognize that there are many varied opinions about what causes ASD
and how to move forward. There are also many unknowns. In fact, part of becoming informed
about autism entails knowing the limitations of our current knowledge and learning to cope with
ambiguity until research provides us with more definitive answers.

As difficult as this may be, in the end there's only one thing to do: Get up and keep going. This is
even more true when you have a child who needs intervention.

We now know that there is more than one type of autism and that there is not a single cause.
Scientists are just beginning to understand the genetic and/or environmental factors that play a
role, and you certainly had no control over them. All you can control is what you can do next.

Autism is manageable with the right information. By educating yourself, you will be able to make
wise decisions, educate others and advocate for your child and your family. This makes it
important for you to seek reliable information from trustworthy sources.

ASD SUPPORT AND ADVOCACY GROUPS

Advocacy organizations and support groups address families' needs, and finding one that is the
right fit for you is essential. Support groups can be great sources of information that can help you
tackle everyday situations, like handling meltdowns, sleep problems, family outings, etc.
They also provide resources on important transitions in life for your child, such as starting
school, planning for college and work, independent living, and much more.

Other members in these groups can also share information about getting services for your child.
What role is the school going to play, and how do you draw up an Individualized Education
Program (IEP)? What programs are available in your area? Where can your child get social skills
training? Is speech, occupational, or physical therapy recommended? What financial resources
are available?

Get involved in your local autism advocacy group to learn and exchange information about these
issues.

BECOMING YOUR CHILD'S ADVOCATE

As the parent of an autistic child, you will deal with many systems involved in his/her
care—schools, doctor's offices, and various resources. With your knowledge of your child, and
of autism in general, you can become your child's best advocate.

Keep thorough records of test results, issues and educational plans. Starting a binder or electronic
record that contains important documents will help you to locate important information as you
may be asked for details for many years to come. Organizing yourself will reduce your stress and
increase your ability to advocate for your child.

CARING FOR YOURSELF

When your child is diagnosed with ASD, it is rarely a complete surprise. It is a parent's unease
and worry, after all, which often leads to appointments with experts and a formal diagnosis.

You'd think that would lessen the impact of hearing someone officially declare that your child has ASD, but it rarely does. Something about that official declaration makes it all real, possibly dashing hopes that your suspicions were wrong. It is natural to feel denial, anger, sadness, fear and hope — all at once, and by turns. Relief may be mixed in, if you have been fighting to get someone to acknowledge an issue, and have been unable to get needed services until they do.

Whatever the case, you have to find a way to care for yourself during this time. Your child's
needs seem urgent, and the tendency is to try to get every intervention in place, running until you
drop. Ultimately, however, that just leads to a parent being extraordinarily overwhelmed –
something that will not help your child or you.

Alternate having "time off" with your partner, or find someone who can hold down the fort a
couple of hours at a time. Turn to old sources of support — friends, family, others or to a
therapist — and seek new ones if the old ones are not enough. Support groups for parents of
children with autism can be very helpful, especially during this "newly diagnosed" period.
Whatever you are doing on behalf of your child, make sure you also give yourself time to find
your balance again. You will need your strength to forge forward well—both for your child and
your family.

PARTICIPATING IN RESEARCH: BEING PART OF THE LONG-TERM SOLUTION

As you learn more about ASD, you will find that there are far too many questions without
answers. Research is desperately needed.

One way you can be involved in the long-term solution is by taking part in autism research
studies. There are scientists who are committed to finding answers, but cannot proceed without
data. Believe it or not, data is what you've got! Your individual story, when combined with
others, permits autism researchers to investigate patterns and trends, causes and treatments.

REFERENCE

1. Ofner, M., Coles, A., Decou, M., Do, M. T., Bienek, A., Snider, J., & Ugnat, A. (2018).
Autism spectrum disorder among children and youth in Canada 2018: A report of the national
autism spectrum disorder surveillance system. Retrieved from https://www.canada.ca/en/public-
health/services/publications/diseases-conditions/autism-spectrum-disorder-children-youth-
canada-2018.html

Reproduced with permission of Kennedy Krieger Institute, Baltimore, MD, USA. This
information appeared originally on the Interactive Autism Network Community website at
IANCommunity.org. It has been modified from the original with permission, but Kennedy
Krieger Institute is not responsible for the modifications.

Photo by Marcelo Leal on Unsplash