Autism Advocate Reacts to New Autism Rates

“Earlier diagnosis, better screening, environmental contributors, vaccines…” There are many varied camps that offer an explanation of the rising statistics of autistic birth rates, but in truth while this is devastating to all, to a parent of a child already on the autism spectrum our fears are focused more on the day to day challenges that living with autism presents. Advocating for services, education, and treatment. Living with the day to day fears that present when you essentially feel as if you are entrusting a newborn to strangers on a daily basis. The fears that come when your child cannot read social cues and is therefore again at the mercy of society. The anxiety over wondering if your child will ever develop and sustain relationships independent of you. And finally the fear of what will become of your child should something happen to you. The growing statistics ultimately mean that the community of those facing this fear is growing exponentially. So, what does that mean to me a an individual?

My heart does ache when I hear the rising statistics because I was there…D-day…diagnosis day. And while that was over ten years ago it still evokes memories of overwhelming fear, despair, guilt, and pain. The fight for services in the school system and through insurance companies is work. The pain of watching his peers get older and build relationships and what will soon be romances as he remains perpetually my little boy often catches me so off guard that I have to put my head down to catch my breath. But through it all I am so thankful for him. My son has given me a view of life that I would not have seen before. Does his progress come in smaller increments, yes but each achievement is celebrated with as much fanfare as if they were by leaps and bounds. He has given me the gift of appreciation for every moment of the day. We have much work ahead of us, and unfortunately the knowledge that I am not alone in this struggle is not comforting.

To that end as I am not a clinician or expert I can only give suggestions from the point of view as a parent.

1. Don't give up, ever. It is not an option. Push your child as hard as you push your other children. Expect them to excell in school, home and their communities. Give them responsibilities and chores in the home, make homework manditory and demand it from their teachers whether it is academic in nature, tactile, or speech related. The process of having a routine to work from is important. In short, have expectations of them. How can they grow if there are no believes they can.

2. Work closely with their teachers, program directors, coaches, therapist, etc. Ask questions often and repeatedly, and be their voice until they are their own voice. Just because someone has a degree or license does not mean they are an expert in your child.

3. Dont beat yourself up if you cannot make every meeting, lobby for every piece of legislature, or advocate for every new service that comes down the pike...take care of you! This is a cross-country, not a relay...we are in this for the long haul and no one benefits if you are burnt out.

4. Stay educated, but follow your gut instinct. There is tons of conflicting information available thanks to the internet. Read it judiciously. Don't lose sight of your child, you know them best.

5. Expose them to social situations, people may be inpatient and sometimes mean, but raising your child in a bubble is detrimental to thier growth. Be vigilent for safety reasons of course, but dont isolate them. With the rates of autism being what they are more and more people are exposed to it. Social skill building by modeling is an important part of growth.

6. Above all rejoice in the accomplishments your child makes no matter how small. This builds self-esteem which they need.
To each family, newly diagnosed or living on the spectrum for some time now I offer my anthem of empowerment. No Small Victories…every accomplishment should be celebrated!

Jacqueline Williams-Hines is an autism awareness advocate and author of the No Small Victories autism awareness children’s book series.