The Battle to Get My Son Diagnosed and Treated for Autism.

Getting my son in and diagnosed and treated for autism was kind of a battle. School system was too backed up evaluate right away and then they forgot about it! They actually forgot. I had to pull my son out of daycare because clearly he needed special attention. I changed my work hours to doubles on the weekends so that I could still have money.
I did alot of research on my own about autism. Didn’t know the first thing about it until my son was maybe 1.5 or 2 years old. I had asked doctors and such many times “is it normal that he doesn’t talk? I don’t think it’s normal”. At the age of 1, he was able to spell out (in those foam bath letters) “I love you”. I was flabbergasted. He couldn’t talk but he could spell?? At that age?? The first place I took him for help claimed to have done and IQ test. Against my consent. I was furious when they told me his IQ was basically that of a vegetable. He couldn’t talk so how could they test him? You can’t test someone’s IQ when they can’t even answer the questions!
I was also told by some other practitioner that “unfortunately most kids with autism are also mentally impaired” which I straight up did not believe.

I started asking family members if they’d seen this before. This was my first baby and I didn’t know what was “normal” and what was not. My father recalled that HIS father apparently had not spoken until the age of 6 and was classified as “slow”. But then when my grandfather began to talk, it was clear that his intelligence was high.

My son couldn’t talk until the age of 6 also. He couldn’t speak a word. He made noises. I was terrified that this was permanent. I even accepted that maybe he was not intelligent but that it would be my goal at least for him to be happy.

He had tantrums because he couldn’t speak. One time, I forgot to buckle him in to his seat in the car. I started to drive and he started screaming and kicking the back of my seat. I had no idea what the problem was. I pulled over to investigate and sure enough- his seatbelt wasn’t on and he knew it and that was his only way to communicate it to me. I buckled him up and the “tantrum” ended immediately.

I put him on a waiting list for an autism center that had excellent reviews. We waited for almost a year for him to start there. When I say “we”, I mean he and I. I couldn’t have him in daycare- he was miserable and didn’t interact with anyone. So Monday through Friday every week- I took him out most days to do fun things like going to the zoo or museum. I got used to narrating everything with him because I didn’t know what he knew or if he knew I loved him even.

I continued to work long weekend hours until he was accepted into the center. Then I drove him there during the morning, picked him up at noon and took him to special education in the afternoon. I took on waitressing during the week because as a nurse- I couldn’t work half a shift, go pick him up and then go back to work. I continued to work as a nurse on the weekend. Weekends he spent with his father. I asked that his father maybe take him during the week sometimes so that I could work but he said he “couldn’t” due to his desk job as a receptionist. I could have been making much much more money- twice what his father made by working during the week but I suspect also that with all the therapies I was taking my son to- that his father maybe couldn’t manage that. And it was a lot to manage. I felt kind of like his caseworker.

I spent the vast majority of my time looking for ways to make things better for him. I learned everything I could about autism.

In what felt like a miracle at the time, he began to speak. His speech was slow to come but it was coming!

So many times a well meaning stranger would say something to him and he would stare and I would be forced to say something like “he kind of doesn’t talk right now”. People couldn’t tell he had a disability by looking at him.

We had to switch schools a couple of times because he wasn’t getting the attention he needed or deserved. He was bullied at one school and I was forced to pull him out- while I was 8 months pregnant- because the administration wouldn’t address the bullying.

The new school was amazing. But he still had such a long way to go. A couple of times, the school tried to get me to put him in a center and I refused. Instead, I would come to his school and teach the staff how to behave with him. Eventually, his speech improved dramatically and his behavior problems all but ended.

He became an asset to the school. One of their favorite students. He was a model of kindness, compassion, humor and dedication. He was beloved by all and smart too. It’s like a dream now to think that I was told 12 years ago that he would never talk and was mentally handicapped for life. Nobody would believe it interacting with him now.

I am so so proud of him. He couldn’t have learned to talk and to behave without putting a lot of work into it himself. Sometimes people give me all the credit for his success. But I know he worked just as hard as I did to get better. And I love him all the more for his strength and how emotionally intelligent he is now at the age of 14. He will be a successful and happy adult now, I am sure of it.