Why I Didn’t Want to Mention a Possible Autism Diagnosis to my Son’s Therapy Team

Today, I  let 5 words ruin my day, “look at the puppets’ face”.  I had an eye opening moment about how children with autism are treated by therapists, and how even mentioning autism will unnecessarily change a wonderful SLP’s treatment plan without her even knowing it.

My oldest son has childhood apraxia of speech and an expressive language disorder. He also has sensory processing disorder, dyspraxia, and a slight auditory processing disorder. He was premature and started therapy at only a few days only, but he has been in intense speech therapy for those particular diagnosis’ since he was 2.

When he speaks it is like he has to try to unlock a lock with only a screwdriver. This is why he is in therapy. He wants to be able to communicate his thoughts and we want to hear those thoughts…the only problem is that it is extremely difficult from start to finish for him and it requires a lot of concentration. Some days are easier than others (because he also has medical issues that play a huge role in that speech process), but overall communicating is hard and I pick my battles when addressing it at home. I see how hard he has to think to speak.

When you are talking to someone and you are thinking hard, where do you look? Do you look into the other person’s eyes while you are thinking? Do you look at the ground? At the wall? –I personally look away. I, personally have never had good eye contact with other people and yet NOT ONCE has anyone said anything to me about it, nor has it affected my conversations with others. However, children with autism are often repeatedly taught to make eye contact no matter how difficult or uncomfortable it is for them.

Never once has a therapist ever mentioned that my son’s eye contact is anything that needs worked on. He makes eye contact when he knows the words or the sentence he wants to say, which unfortunately isn’t often, but he does it naturally when he can and no one has had to tell him to do that.

His eye contact does not affect his ability to read people’s emotions or the ability to process what people are saying to him. If he hears my voice start to waver as if I’m going to start crying he looks at my face to see if I am actually crying. I’ve never taught him to do that. He probably doesn’t even need to. He is able to figure out if I am upset either way.

His neurodevelopmental pediatrician says that his medical complications are often found in children with autism. They often also cause seizures. He has never had a seizure and doesn’t have many outward signs of autism in my opinion, but it is important to see if his psychology meets his biology in that regard because the more we know about him the better, in my opinion.

To me, the way I think about getting my son tested for autism is a lot like how in college I had personality testing done. I learned that I am a mix between an introvert and an extrovert. I am a bit more introverted though and knowing this has helped me understand why I feel anxious in certain situations and why I have always preferred to sit at home and read rather than go out. Knowing that my husband is an extrovert has helped me understand the way he feels as well and has helped our relationship.

I feel testing for autism will help us all understand my son better so that we can always remain compassionate and understanding toward him. That doesn’t mean that I’m not scared, or that I’m planning on being passive about helping him with it…it’s just how I feel about knowing the diagnosis and that helps me get through the testing process, because it isn’t easy.

Anyway, I was nervous about mentioning to any of our therapists that we were getting my son tested for autism. I was nervous because I didn’t want them to treat him differently. Sounds silly to worry about huh? BUT I hear about it happening all the time. Once a child is diagnosed with autism, professionals and schools can tend to blame any challenges on the autism and overlook certain personal challenges that actually do need to be focused on so that child can feel safe, comfortable and heard in their environment.

His treatment right now is exactly what he needs.  He is working on what he needs to work on in order to communicate and feel comfortable in his environment. Nothing more, nothing less. I didn’t want that to change ever, so I didn’t want to mention Autism. I kept telling myself I was being ridiculous for even having those thoughts…until today.

Today, for the first time, without discussing it with me, without even having an autism diagnosis yet, our SLP told my son to say a sentence over again, but this time to “look at the puppet’s face”. I can honestly say it took the wind out of me. I knew right then that the way she was looking at my son was different than it was the day before.

Never has that ever been said to him in therapy before. In 4 years of speech, occupational, and physical therapy, his therapists have NEVER saw a need to tell him to look at a face when speaking. It took him all the energy he had to say that sentence, and she wanted him to use whatever energy he had left to say it all over again, but this time while looking  a puppet in the face, as if that was important. He did it, willingly, but I saw the look of confusion on his face. Like, “why did I just have to do that?”

I’ll tell you why… because I mentioned that we would be testing for autism to her and that we are in the second stage. Now, all of a sudden it isn’t a language disorder, or fluency, or articulation, or apraxia that needs to be worked on, it is autism.  All of a sudden all of his old individualized goals don’t matter. All of a sudden the only thing they see is that he doesn’t make good enough eye contact.

THIS DOES NOT HELP HIM!  NOTHING has changed! You have been working with him for a year. You know him.  Not one thing has changed from yesterday. He needs the help that is necessary for his individual needs! For his own personal strengths and weaknesses, not what you think his strengths and weaknesses should be.  If you didn’t notice an eye contact issue before I mentioned possible autism, than it really never was an issue was it? Even if you did notice it before and now have a reason to address it, making eye contact is NOT important to me, or him, or anyone else.

My son doesn’t have an autism diagnosis. I don’t know yet if in the future he will or not. We are in the middle of figuring that out. I’m not pretending to know what it is like to have a child with autism, but I DO know what it is like to feel disappointment in a team who is supposed to be focusing on finding ways that will help my son reach his goals.

There is a solution though. Stay vigilant. You are part of your child’s team. Stay in constant contact with your therapy team and tell them how you feel and how your child feels. Watch as many therapy sessions as you can so you know what is happening. When you communicate your concerns to your therapy team they will either understand, or you find a new team, either way you and your child will be better off.

April 2018 www.homeeducatingapraxia.com