As you may or may not know, DC is 25 (almost 26 – gulp) years old. He was finally and officially diagnosed with Autism when he was 5.
I knew there was “something” by the time he was a year old and looking back, probably before that.
I originally thought that he could not hear.
After many visits to many doctors any many different hearing tests, they determined that he in fact, could hear perfectly.
This and a whole list of other issues, still had me believing that there was “something” – they were telling me that he could hear– okay, but there was still something.
He was not talking or attempting to communicate, but doctor after doctor told me that boys develop more slowly and not to worry.
I was worried.
By the time he was three there was still no attempt at speech, there was flapping, stimming (although we did not call it that back then) and no eye contact. There were meltdowns (we did not have that word back then either) and as I said, a whole list of other issues that doctors continued to tell me he would grow out of. I began to feel as if this was all in my head but I finally had him evaluated by Easter Seals and Early Intervention.
Both agencies agreed that there was a “speech delay” and we began to receive weekly home visits through Early Intervention for speech and OT. Although his Early Intervention therapists said that there was “something that they could not put their finger on”, his official diagnosis remained a speech delay.
They told me that because he was an only child, it would benefit him to be around children his own age. Being a single parent since he was 2, not working was not an option, so at the time, he was with his Godmother’s mother during the day when I was at work.
Following the doctor’s and therapist’s advice, I took him out of the home daycare and placed him in a local daycare a few days a week. The rest of the week he with my friend who not only had a daughter exactly his age but another daughter a few years younger. Activities for special needs children were non-existent at that time, so I found a gymnastics class (he loved to climb) but I decided to put him in the class for children 18 months old, half his age because even though everyone was calling this a speech delay, I knew it was more than that and I knew he would not be able to handle a class made up of his peers.
Well…. That was a disaster! I spent most of the time in a corner crying. He just could not stand to be around the other kids, and most of the time I had to take him away from the situation and bring him over to a corner, nullifying the whole socialization effort.
At the end of each class was “circle-time” – we tried, we really did. He would sit on my lap and scream and scream; he would try to wiggle away. I would chase him and bring him back while trying to ignore the stares from the other mothers.
Then there was “Blaine” and his mother…
It has been 22 years, but I will not forget Blaine and I certainly will never forget his mother. His mother who sat next to us on the floor consoling Blaine loudly as if he was being traumatized by my child’s crying. Let me just say that Blaine was fine, he was really not even paying attention to DC at all, but she continued on and on “Don’t worry, it’s okay. He won’t hurt you” all for my benefit not her son’s.
We did try again the following two weeks with the same result, the third time we just ended up picking up and leaving mid-class. That was my last visit, but I did send his Dad with him the next week just to prove a point that he was not understanding at the time – I will get to that shortly.
A few days after our last disastrous trip to gymnastics, I was giving DC a bath. As he was sitting in the bathtub, I looked at him and he looked as if he did not even know I was there. He looked as if he was having a conversation in his own language with someone that only he could see.
It was right then and there that it hit me! He reminded me of Tommy Westphall, an autistic boy – a character from the old television show, St. Elsewhere. At that point, the show had been off the air for a good five years, but I still remembered the character vividly.
I knew nothing about autism except that Tommy had it. I had never met an autistic person and other than the way Tommy behaved, I knew nothing about it – frankly I cannot even say for sure if I had ever heard of it until then. I know it sounds ridiculous but it was at that moment that the proverbial light bulb went off in my head.
I called his Dad right away, but he was not hearing any of it. In his defense, he really did not see the delays – he really had no experience with children this age and nothing to compare DC to. His was in the military for many years; the years when his nieces and nephews were young. He was never really around young children at any time in his life for any length of time.
I decided that we would change his day with DC that week from Sunday to Saturday so he could take him to that dreaded gymnastics class. All of the talking and explaining in the world was not going to change his mind until he saw the differences first-hand.
He saw them.
He got it.
I will never forget the expression on his face when he brought DC home that day.
I had already called DC’s doctor with the suggestion of autism and she made appointments for him to be evaluated at a Children’s Hospital that was supposed to be very prominent in the diagnosis and study of autism. I did take note of the fact that she did not seem surprised that I was thinking and bringing up autism.
In the meantime, his Dad happened to come across a local news story. The Anchor of one of the local news stations did a story about his own son being diagnosed with Asperger’s. He called the station and requested a copy of the tape and yes, there were quite a few similarities between his son and DC.
Long story, short (too late, I know) – we went through the whole evaluation process and they gave us a diagnosis of:
“Severe speech delay – Rule out Autism”.
What might that mean?
It was explained to us that “Severe speech delays tend to mimic the classic symptoms of autism” including the flapping, lack of eye contact, food and texture aversions and of course the lack of speech itself.
If his speech is just delayed and he should begin to speak, the other symptoms would disappear. They wanted to wait another year to see if he would begin speaking and “rule out autism”.
Fortunately, by this time I already had him in Special Education. He qualified, having previously been diagnosed with a delay, so all of this time was not being wasted, but it would have been beneficial to be able to work with an actual diagnosis. (School-Age for SPED in this area is 3 to 21 years of age)
We returned the following year and he was finally officially diagnosed.
It took more than 4 years since I first thought there was a problem – 4 years of doctors looking at me as if it I was just an over protective, first-time mother – 4 years of people telling me that Albert Einstein did not speak until he was four – 4 years of people telling me that he did not speak because I did everything for him and he did not need to speak for himself – 4 years of the looks, stares and comments from people like Blaine’s mother – 4 years of taking him to doctor after doctor (this is not to say that all of the above does not happen still, because it does, but at the time – not having a diagnosis – I was beginning to believe that all of this was either all in my own head or all my fault or both) – 4 years…
I honestly do not know if his doctors and therapists back then just did not want to bring up autism, because knowing what I know now – it should have been apparent to all of them.
Apparent as it should have been, still I had to be the one to say it first….
If you were a fan of St. Elsewhere, you will “get” the photo.