Joining the Autism Club and Selective Mutism

Joining the Autism Club and Selective Mutism

My child has Autism and that is a good thing.

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.

Diagnosis: Autism

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…

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.

Newly Diagnosed - Autism

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? 

46 thoughts on “Joining the Autism Club and Selective Mutism

  1. Margaret

    Yes, as you know my son was diagnosed with Autism in February. I was expecting the diagnosis but my husband was not. I immediately searched out local support groups and any supports that we qualified for. Robbie is considered “high functioning”, whatever that is supposed to mean. Some days are harder then others but knowing has changed our outlook on things. Hugs and I am here if you need to talk.

  2. Jeanette

    My niece has Autism and she is thriving well at 22 years old. The key is to help her cultivate what she loves because she will be AMAZING at it.

  3. Jaime Nicole

    What a wonderful thing that you are so proactive and able to be there for your kids. In my past life working with families with autism, I have been blown away by the character of the kids and especially the moms. Social support and advocacy are so important and it sounds like you are on the right track.

  4. Liz Mays

    I can see how this was such a shock. It makes sense that you’ll be able to better improve her communication skills now that you have the diagnosis. It will be an awesome moment when she starts getting better and better in social situations.

  5. Jessica Harlow

    It is never easy to hear any diagnosis when it comes to our children. Just because they now have a medical diagnosis or label, doesn’t mean they aren’t capable and without greatness. Your daughter has a precious smile! :)

  6. lisa

    I can’t imagine how it feels to get that diagnosis for your child. But there are so many resources and information out there to make her life as normal as possible!

  7. Alli

    My friend’s granddaughter was diagnosed with autism when she was a toddler. They, like you, are doing everything possible to ensure she has a bright future.

  8. Jennifer

    I’ve never heard of Mutism before. At first I thought hmm my daughter could have that but the more you went on, I don’t think so. It’s really interesting to see what you picked up on.

  9. Ourfamilyworld

    My friend’s daughter was diagnosed with autism when she was about 3. She is now 12 and doing great. It’s expensive but her parents make sure she attends therapy classes.

  10. Jennifer

    I don’t know anyone with autism, but I’m very glad to hear you finally got a diagnosis. It’s always better when you know exactly what you’re facing.

  11. ricci

    I’m sorry sweet Aybra was diagnosed with autism but now at least you can get her the help she needs. And she will just do things in her own time which I think is perfectly ok!

  12. Ann Bacciaglia

    My friends Daughter was diagnosed with Autism when she was two. She is now five and is nonverbal. She might not be able to communicate her needs very well but she knows how to operate the Wii and put on Netflix to watch her shows. She searches for the parts of the movies she likes and will replay it over and over. We are working on her using a tablet to help her communicate with us.

  13. Maggie Branch

    Growing up there was a girl I was in school with and she was autistic. She was a wonderful girl and has gone on to live a very full life. You are doing the best thing possible for your daughter by having had her tested and work towards beginning therapy to help her manage the autism. You are a wonderful mother and Aybra is lucky you have you.

  14. Terri Ramsey Beavers

    The doctor I worked for before my spine collapsed has a son with autism. 20 years have gone by since I first started working for him and his son is doing really well. I hope everything works out well for you. I’d love to let the kids have a vlog blog. They really love making home videos.

  15. Michele D

    Having a child being labeled with Autism is extremely hard for parents. Learning the most out of the disability is a process. I’m sure it’s an up hill battle. I wish you and your daughter the best.

  16. Jeanine

    I love that you share your journeys, and your struggles. This will help so many. I know a few families with children with autism and know what a struggle it can be for them. I will be directing them to your vlogs!

  17. Jenny

    We went through similar with my son when he was younger. I am so glad you got some answers so you can start helping her reach out more.

    1. LifeAsAConvert Post author

      I definitely saw some things at an early age that reminded me of my cousin who has severe autism, but because my daughter’s wasn’t so drastic, I just brushed them off.

  18. Lynndee

    No, I don’t have a child with Autism or know somebody who does. Thanks for sharing your story. Here’s wishing you and your daughter all the best.

  19. Britni

    I know a family who has a couple of kids who have Autism. They are an inspiration to me as I watch them deal with the struggles that accompany Autism. Amazing family!

  20. Rebecca Swenor

    I do have a nephew who has autism. It is so important for parents and family to understand all there is to know about autism when dealing with children with it. The more you know the more you can help them and help yourself.

    1. Rebecca Swenor

      I have to say that I admire how you took action and researched when somebody mentioned something to you about her. Kudos to you and your viewer.

  21. Rachelle

    We do not have an autism diagnosis, but my daughter is on the spectrum with her Sensory Processing Disorder. I was just so happy when I found out because at least we knew what it was! She goes to OT twice a week and it’s totally helping! Good luck in your journey!

  22. Chubskulit Rose

    You are a very strong and inspiring Mom. It is nice that you get to share your exeriences with your children through your vlog, I am sure people will be inspired and learn from it.

  23. Crystal Lopez

    My heart breaks for parents who have to endure a diagnosis like this with their children. There has been such a growth in resources for both mom and child that certainly make managing and coping much easier.

  24. OurFamilyWorld

    Aybra is such a sweet girl and I’m sorry to hear that she’s been diagnosed with autism. At least know you understand what is happening with her and you’ll be able to address her needs properly.

  25. Maggie Lydon

    I do not know anyone personally who is autistic. You are obviously a great mom and doing everything you need to do for your daughter to live a full happy life. You’re doing great!

  26. Bonnie @wemake7

    I’m so glad that you got the testing done and found out so you know what is going on. Thanks for sharing your personal story.

  27. Tonya C

    Thank you for sharing your story, I am happy to hear that you got the testing she needed done to find out what was going on with her. And that you now know how to provide for her and her needs.

  28. Yona Williams

    It must be a relief to receive a diagnosis so that a lot of unanswered questions or behaviors now have meaning. I do not know anyone with an autistic child, but I have read how wide-ranging and different each case is.

  29. Krystal

    At least you have a plan for the future with the diagnosis! What a relief to have answers. Best of luck to you and your family!

  30. Melissa Vera

    Any parent cries when they find out something is wrong with their child, when my youngest was diagnosed with Epilepsy I went through all the things that I could have done wrong, But now we focus on what she can do . My heart goes out to you.

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