My son is what most would consider a “late diagnosis”. He was not diagnosed with Autism until he was 5 and a half. He has a high functioning form of Autism known as Asperger’s Syndrome. For most, a diagnosis is a sad moment. For us, his diagnosis was a relief. We finally knew what was wrong and how to approach it. I have learned quite a bit in our four years, but there is always more to learn. I think the very beginning is the hardest part. So here are some tips for those of you that are just starting the Autism journey.
Tip #1: Don’t let the diagnosis defeat you.
Having a child with Autism is not the end of the road. You need to do what you have always done. You adapt to the situation. Yes, certain things will have to change, but now that you have a clue as to what you are dealing with, the changes are more readily known. Adapt, live, love.
Tip #2: Do not believe everything you read, hear and see.
I fell into this trap at first. I was given books, sent links to articles, listen to the stories from doctors and forums. Don’t do it. Just don’t. At least not right away. No child with Autism is like another, so all of the “advice” that people give you, is just going to scare you and stress you out at first. Nobody knows your child like you do and now, you have another layer to get to know.
Tip #3: Do start looking into programs that can help.
There are a lot of programs that can help children with Autism and their families. I’m talking about beyond the doctor. A lot of local play places will hold sensory nights for kids with special needs, there are wonderful OT groups, respite (help for parents) programs, PCA programs. There are grants and more available. The list grows everyday as the awareness does.
Tip #4: Prepare yourself for questions and judgmental stares.
I can’t even count how many times someone has asked me, “Are you sure your son has Autism?”. A lot of people fall into the cookie cutter trap. They think that if they have seen one Autistic child that they have seen them all. I get questioned all the time. It comes with the territory. I mainly get questioned by family and friends. If your child has a more severe diagnosis, you may get questioned by complete strangers. The judgemental stares happen daily. When my son shrieks in excitement because a store carries blenders. When we eat out and he has more food on his face and shirt than my 3 year old. When he can’t figure out if he should push or pull a door or how much force he needs to use. When I bend down and give him a stern warning, through gritted teeth, that he needs to knock it off. People stare. People judge. Just perfect your fake smile or, if you are like me, your major stink-eye!
Tip #5: Your child has Autism, but Autism doesn’t have to have your child.
Set expectations. Set goals. Set rules. Don’t let your child have unexpected behavior just because he has Autism. We refuse to let our son use Autism as an excuse. Yes, we know it can make things harder for him, but we know he can achieve whatever he sets his mind to. I know that my son is capable of great things, so I am not going to let him surrender to his diagnosis.
Again, adapt, live and love, but don’t let it defeat you!
You can find more Autism resources at AutismSpeaks.org