Joining the Autism Club and Selective Mutism
We have a small YouTube channel – (LifeAsAConvertTV) – On that channel we post a vlog every single day. Some of you may be familiar with vlogs, but for those that aren’t it’s basically a video blog or video diary. I get to share (in video) what my life is like as a single mom with three special needs children. Cool, huh?
I enjoy posting these and others enjoy watching them.. At least a few people enjoy watching ours. We are by no means a big YouTube channel, but we have our consistent viewers.
After posting a recent vlog, I was contacted by one of our viewers asking if Aybra had selective mutism. (It happened to be this vlog of us trick or treating.) I had never heard of selective mutism before, but after researching it, I convinced myself that she did have it. She fit all of the criteria.
Selective Mutism – What is it? Why was I convinced Aybra had it?
Selective Mutism is basically an anxiety disorder that causes a person to lose speech in certain situations. I read so many articles on selective mutism, watched quite a few youtube videos, and questioned people that are frequently around Aybra in a public setting. Out of all of the people I questioned only 1 said they had ever heard her really speak. Crazy, right?
Aybra is shy. Painfully shy. At least that is how I described her. She would laugh, play, sing, and talk at home, but the minute she went outside she was different. She had a very hard time warming up to anybody. She never talked to strangers. She would sit on the sidelines and watch the other kids play. She never initiated play with other children and hardly ever joined in their play. If she did join in, she usually had her own rules. She wouldn’t talk to them. If she did utter a word, it was simply that, a word, perhaps a phrase at times. She would often repeat that word (or two) over and over.
Her recent eye exam was torture. She wouldn’t read the chart at all. No matter what I said, no amount of coaxing would make her read the letters. She knew the letters, could see about half of them, but just wouldn’t speak.
I started really paying attention to how Aybra acted in various settings. I realized that she would talk to me and her brothers but as soon as somebody new entered the conversation, or circle where we were talking, she would go quiet. She didn’t care if they heard from a distance, but she wouldn’t engage with them in anyway. She even acted like this with family members that she loves and sees frequently.
At a recent birthday party one of the guests came to me so excited because he heard Aybra say two words: “pink poodle”. This was a boy that has been in 4-H with Aybra for 2 years now. TWO YEARS! How had he never heard her talk in 2 years?
The more I watched her, the more I realized she was different. I asked a speech therapist at our clinic what she thought and if I should have Aybra tested (for selective mutism)… She said yes and referred me to a very lovely lady named Dr. Ann Prather.
Testing for Selective Mutism… and Autism?
The tests were scheduled and we arrived ready for some answers. After giving the history, Aybra stayed inside a room with the Dr. while I sat in a room on the other side of the door and filled out the parent tests. They were basically fill in the bubble tests with answers like agree, somewhat agree, disagree, etc.
I filled out two different tests while Aybra worked. The craziest thing happened while we were there. Aybra talked. She said “hungry”. I think after hearing her speak and seeing that perhaps she didn’t have selective mutism because she wasn’t completely quiet, the Dr. let us briefly leave and grab something to eat. I think the Dr. also wanted lunch. We grabbed a bite to eat and returned to the bubbles.
Some of the questions on the tests I was filling out made me think our trip would be a waste. Not only was Aybra actually talking some, except for the social aspects of the answers, all of my bubbles were marked “Disagree”.
No, Aybra does not start fires intentionally.
No, Aybra does not bully other kids.
No, Aybra does not act impulsively.
No, Aybra is not violent.
I figured we would be sent home hearing “She is just shy”.
Aybra continued to talk without me in the room. I guess it helped that the Dr. somewhat “forced” her to talk by having her answer questions that she couldn’t just shake her head yes or no for. And while she didn’t talk in sentences, she did say single words. I think she said maybe 10 words total.
I turned my papers in and went to work on some things I had brought to keep me occupied during what was supposed to be 3 hours of testing. I didn’t get to work for long because the Dr. returned with another bubble assessment. This time it was one for Autism. I immediately thought she must be suspecting that or wanting to rule it out. Why else would she say there were two tests (which I had already turned in) and then bring an additional one?
Like the other tests, the answers for Aybra were mostly no on some parts.
No, Aybra doesn’t have meltdowns.
No, Aybra does not have repetitive movements like hand-flapping.
No, Aybra does not run out in front of cars.
No, Aybra does not lack awareness of surroundings.
Then, I got to one section and almost all of the answers were yes. Ah-ha! So, this is why she wanted the Autism assessment.
I was expecting to wait a few weeks for any results, so I was impressed when we were told she was scoring everything right then so we could discuss it before we left. I wasn’t prepared for what I was going to hear.
Aybra has Autism.
Not only that, but Aybra’s IQ score was so low that she is considered mildly mentally retarded. What a blow.
It was hard enough to hear that my child has Autism, but also to hear that she isn’t very smart either and definitely lacking behind her peers made it even worse. We both agreed that Aybra was definitely capable of more, but even if she did the things she was capable of, her scores still would have been low.
The Dr. is going to write everything up and send me the official results. I’m not sure exactly how she is phrasing everything, but I will know shortly. There aren’t too many ways to label “Autism” and “Intellectual Disability”.
On the way home we sang songs and laughed until Aybra fell asleep. I had a little cry fest. I couldn’t cry in front of her. I don’t want to give the impression that this is a terrible thing (it is!) or that anything is wrong with her (there isn’t!).
Looking back, I can see how a lot of her behaviors could be characterized as being Autistic. However due to her being born prematurely and having a brain bleed, I have always assumed that her delays were because of that and her behaviors were just her.
While I am not happy that my child has something like this, I am glad to have an answer that I can give to people when they ask me why she won’t talk or play. The main purpose behind having the testing was so she could begin some sort of therapy to help get her socializing and communicating more. The diagnosis doesn’t change any of those plans. If anything, it helps qualify her for more services she will need to overcome these issues. And that is a good thing.
Dear readers, do you have a child diagnosed with Autism or know somebody who does?