Asperger’s Syndrome – A Mom’s Perspective
March 1, 2017
Our 23-year-old son is back home with us. And I am very happy with that. Why? Because he is talking to us again and I know what is going on with him on a daily basis again. But let me back up so you understand why this is so important to me.
You see my son has Asperger’s Syndrome or as my son says – Burger Syndrome 😉 It is a type of high functioning autism. Autism is a spectrum disorder — that means it is different in each person. One person can be like Dustin Hoffman was in Rain Man. Another person can be functional
in the modern world — they appear a little quirky.
There is a lot written about kids with Asperger’s Syndrome. That’s wonderful. But when my son was diagnosed, there wasn’t a lot written. We got the diagnosis from a pediatric neurologist. The doctor suggested we read one book – Tony Attwood – Asperger’s Syndrome: A Guide for Parents and Professionals .
Then I got to tell our school system. And I found out that my son was the first Asperger’s child identified in our local school system. Sigh.
That also meant that my son was identified late. As many of you parents know, who have autistic kids, early identification is critical. Early treatment of autism means that the child has a better chance of benefiting from school because they can understand more of what’s happening around them. (1)
My son wasn’t identified as autistic until the summer between 1st and 2nd grade. That is extremely late for an autism diagnosis. Now I don’t want you to think that I didn’t try to find out what was going on with my son. In fact I had been trying to figure it out since he was a baby.
Finding Child Care was Difficult
I was a full-time working gal when I had my son. Finding infant child care was difficult enough as most child care is for children age 2 and up. But with my son’s behavior, even as an infant, made the task almost impossible. We went through 3 different child care situations before we found one that would work with him.
These child care givers were experienced with infants and with having multiple infants, yet our son gave them fits from the start. He didn’t want to be cuddled, yet he cried when he wasn’t. All the attention had to be on him. He didn’t like music or lots of colors. One of his care-givers gave up and cried with frustration at her inability to care for him. This was an experienced mother with six kids of her own.
Eventually we found a care-giver who was perfect for him. She found that he
was very like her youngest son (who was an adult). And she was able to care for him one on one — no other kids or adults in her house to distract her from caring for him. That was great, and it would’ve continued on but for one thing. I became unable to work due to an illness.
We ended up back in my home state. And my son’s issues continued. I was an extremely inexperienced mother. And the doctors took advantage of that. Not intentionally I don’t think. But when I mentioned
something that my son had done – they said it wasn’t important. And I didn’t have the experience or knowledge to challenge them.
From the age of 3 to 5, I kept talking to my son’s pediatricians about his behavior. We finally got a diagnosis of ADHD and the prescription of Ritalin for him (at age 4).
Ritalin Made a Difference
Before you think I am crazy to have put my child on Ritalin at age 4 — stop. Yes STOP. You see, that wasn’t a word that my son could comprehend until we put him on medication. There was no WHOA to him at all. If he got a notion to open a door and jump off our front porch — he would do that.
Now our front porch at the time was 15 feet off the ground. So you could imagine the possible consequences. There I was constantly running after him and, with my being ill, he was faster than me. I would holler to stop him, and there was not enough “sense” in his head to stop him. Discipline just wasn’t working — wasn’t getting through. There was a wall up preventing the discipline from sinking in.
So we tried the medication. And what a difference! It slowed him down enough for him to develop a whoa. Discipline measures finally started working. I read a lot about ADHD and I thought that it described him somewhat but didn’t explain all of his actions.
He got evaluated by our local school system (a Missouri school system) for their PRE K program. Even with a diagnosis of ADHD, the school system didn’t feel that he had much of a need for their services. He knew his colors and was working on his numbers – so he didn’t need help. My concerns about his socialization issues were downplayed and they offered a placement of only 1 day a week for 3 hours.
We rejected that as we realized by then he needed more interaction time with other kids. So we enrolled him in a local Church program. My son was excited. So much so that when he was told that he couldn’t go until he was potty trained, he trained in one week. He was 4 years old at that time.
Private Pre-school was a Mistake
Well, that was a mistake. Sending a child into a school system where they aren’t experienced with kids who have mental health / behavioral issues is setting the child up for failure. And, unfortunately, Asperger’s Syndrome and ADHD do fall into the mental health arena. You cannot discipline these issues to correct them. Spanking alone won’t fix it. And that was their attitude there, and frankly it was mine as well. Remember, I didn’t know about the autism at that time.
So my son ended up hating going to school before he was even “in school”. We ended up removing him from that program.
Then we moved. My Mom finally retired from her job and we all decided a change of scenery might be the right thing. We decided on Alabama as my brother lived there. So we moved and my son ended up starting Kindergarten in Northern Alabama.
Kindergarten Started on a Good Note
He did really great the first semester of Kindergarten. There were other kids in his class that acted out (really acted out). So his behavior wasn’t unusual. His teacher and the other kids liked him. And he liked going to school.
Then we found the house we wanted to buy. It was located in another town in AL. And we ended up moving there and my son had to move schools. Bad choice.
Our town has a good school system. It’s one of the top ranking schools in the whole state. There are many teachers there that I would’ve liked to have myself when I was in school. However, they were not set up to deal with unique situations.
After we moved, my son’s second semester of Kindergarten was disheartening. He spent most of the semester sitting out in the hallway. His teacher was sweet and kind, but it was her first year of teaching. She didn’t have a clue on how to handle his behavior; I didn’t really have a clue either.
The first evaluation of my son through our new school system showed that my son had a low IQ. This was in addition to his behavioral issues. I knew that my son did not have a low IQ . We discussed the issues with the school and after his behavior continued in 1st grade (he had a more experienced teacher for first grade), we asked for an IEE.
IEE = Independent Educational Evaluation
An IEE is an Independent Educational Evaluation. It involves getting an evaluation done by someone who is NOT connected to the school system. Thus, they may recommend resources that the school does not have. Anyway, the gentleman who did our IEE thought he saw something in my son that hadn’t been diagnosed before. To confirm his suspicions, he referred us to a pediatric neurologist who made the final “a hah” diagnosis of . . . high functioning-autism.
Finally, we had reason for my son’s behavior.
And after reading about autism, I could see that it explained the strange behaviors we had seen. For example, when following a garbage truck, my son loved the “smell” that was coming from the truck. But he would gag when he was close to roses. Apparently, a lot of signals were crossed in my son’s brain.
So now we had a diagnosis. A diagnosis that two pediatricians, two different school system evaluations, and one psychiatrist — had missed. I thought that would be the end of our struggles now that we knew what the issue was. However, I was wrong.
Please see part 2 of this posting for the “rest of the story.”
If you’d like to see a list of Autism Resources for Children please click here.
What problems did you have in getting an autism diagnosis for your child? Did you have any roadblocks along the way? Please leave a comment below. And remember that sharing your story may help those who are just beginning their journey towards a diagnosis.
(1) Autism Speaks; “Early Intervention For Toddlers With Autism Highly Effective, Study Finds”; 11/29/2009; https://www.autismspeaks.org/about-us/press-releases/early-intervention-toddlers-autism-highly-effective-study-finds