A friend of mine contacted me and said they had a recommendation to have their son evaluated for autism.
He was completely overwhelmed and had no idea where to begin with the process and was looking for direction.
First of all, I’ve been there too. And here’s my advice.
1) Breathe.
Even if it IS autism, it isn’t a ‘new’ condition for them. Simply a new ‘label.’ They are the same person in either outcome.
2) Sign up to get the evaluation, even if you are unsure if you really want to do it.
Find an accredited hospital to get evaluated. Get on the waiting lists NOW. Sometimes they can be years long and you can explore your options while you wait. You can always cancel if you want, but the longer you wait to get on the lists, the longer you will have to wait for the actual evaluation. And you will WANT to know the results one way or another.
3). Don’t let a stranger who spends a couple hours with your child determine how you view your child.
They are the same before and after the evaluation. Don’t let the value you have for your child be determined by a label given to them by a complete stranger.
4) Advocate for services.
The main reason we pushed for an ‘official’ autism diagnosis was because we needed it to get Jonah services and into classes he needed at school.
5) After diagnosis: Allow yourself time to understand what autism means for you and your family.
Give yourself time to ‘come to grips’ with autism. If you feel despondent, that is normal. It’s fine. Sometimes it takes time for you to put aside your own aspirations for your child and to focus on THEIR needs and eventually THEIR aspirations for themselves.
6) Don’t let despondency overtake you.
I was in a place of despondency for a long while around the time we learned about “autism.” It brought me down. It brought my family down. It effected my work, my friendships and my parenting.
There is nothing wrong with feeling uncertain about the future.
But the fear of uncertainty can be crippling and if you dwell there long enough, it leads farther down a dark hole, which can lead to anxiety, depression, and addiction.
7) Find your ‘tribe.’
You need people around you who also “get it.” Whether it’s a support group, an online group or another “autism parent,” find people who relate to your story. Who you can vent to and celebrate victories with.
8) Do your own research.
You know your child better than ANYONE. Better than the “experts,” better than the “psychologists,” better than other parents, teachers, and better than other autistics. There will be a lot of opinions regarding EVERYTHING in the autism community.
When it comes to YOUR child, Nobody knows THEM better than YOU. Take other opinions into account, but find out for YOURSELF and do what’s best for you and your family.
9) Take it one day at a time.
Even if progress is slow. Don’t worry about the distant future. It is completely unwritten. You don’t know WHAT your child is capable of or what potential they have 5 – 10 – 15 years down the road.
10) Don’t worry about what others say.
“Ignore the haters.” Nobody else knows your life or walks in your shoes. People will think what people will think. Keep being you. Keep advocating for your child. Keep being the Ausome parent you are!
What have you learned that you would add?