Not the ‘Real’ Autism?


DC was agitated all last night. He gets agitated often but these days it does not seem to last as long as it did when he was younger. It usually comes and goes in bursts and then it is over – sometimes not, but for the most part now-a-days, it does not last too long unless something is really bothering him.

DC and my conversation last night:

DC: Mom, come here.

Me: What is wrong?

DC: Nothing wrong. I feel all right.

Me: You don’t feel well?

DC: (Getting angry) I feel all right! Behind me!

Me: What’s behind you?

DC: (Still angry) NOTHING BEHIND ME! I feel all right.

When he came back downstairs, still with that look in his eyes I asked;

Are you sure you are all right?

DC: Behind me!

Me: Does your back hurt? (I checked his back – there was nothing)


Me: Is your back itchy?

DC: NO! I fine!

Me: DC are you sure you are feeling okay?


Worried that he didn’t feel well I told him to rest on the couch with his ipad.

One of the many things that I worry about is DC having something medically wrong with him and I will not be able to tell.

Unless he has a fever, vomits or passes out right in front of me (try catching a 200lb boy at 3am) there is really no way for me to know. He doesn’t really let on when there is a problem and when there is, his behavior is pretty much the same as it always is. I don’t know if he doesn’t feel pain like the rest of us or he just doesn’t process it the way we would expect. This guy can run full speed with a sprained ankle!

When he got settled, I tried again.

Me: DC, you know that it is very important that you tell me if anything ever hurts. If your head hurts, if your stomach hurts, if your tooth hurts or anything else hurts, you always have to tell me. Promise?

DC: Yes, I promise.

Me: Tell me what you are promising to do.

DC: I promise never to hurt. 

Me: DC, every one has hurts some times. If something is hurting, you have to promise to tell Mom.

DC: I promise.

Me: Tell me again what you are promising.

Blank Stare…

Me: What are you going to do if your stomach hurts?

DC: Go to the bathroom.

Me: Okay…. but what else?


Me: You are going to tell Mom. What should you do if your head hurts?

DC: Rest.

Me: Good, and what else?

Nothing, again and I had to prompt him to say “Tell Mom”.


I keep seeing posts on line talking about the ‘Real Autism’. How my child being happy is somehow doing a disservice to the autism community. I will never apologize for my child being happy. He is, for the most part a happy guy. He’s funny and certainly a charmer and he knows how to use those charms to his advantage. When he does something like tape the sides of  his mouth with scotch tape to keep a smile on his face, it is funny but it is also impressive to me that he came up with it.

I find it much easier to explain autism, HIS autism by telling specific stories about how his mind works, the things he does or says, the many things he is obsessed with, his likes, his dislikes and some of the issues we face. At times I will use humor to tell a story because at times the situations are funny.

The fact remains that he, an adult, can not even communicate to me when/if there is something wrong or something bothering him.

No, he may not be a 25 year old in a diaper but..

my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he’s being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

What about this is this not ‘Real Autism’? Everyone is different, DC’s autism is certainly different than your child’s without a doubt. Different does not mean ‘Not Real’.

Even with all that DC has accomplished over the years, the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings and will long out live all of us. He will at some point have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers.

Even though I try to write in a more upbeat fashion, I think I have made this point perfectly clear over the years.

What about this is not ‘Real Autism’?

We are all fighting on different fronts in the same battle – the battle for our kids to lead productive, safe and happy lives. But I can not write about your child’s autism, I can only write about my child’s autism.

If you are adamant about spreading awareness about the other sides/levels of autism then DO THAT! We need to show the public every single side that we can. Start a blog, write and submit articles to online publications – there are enough of them out there, ask to write a guest post…. do something other than admonishing people for their views and stories.


I choose to tell our story they way I choose to tell it. It is OUR story.

You have to be the one to tell your story.

There is room for everyone.






13 thoughts on “Not the ‘Real’ Autism?

  1. I’m an autistic adult and sometimes I have trouble getting out the right words. Your boy could know what he wants to say, but his mouth says different words instead of the ones he’s thinking of. Sometimes the pressure of having to answer “right now” can make me clam up despite being desperate to say what’s wrong. Or I might eventually yell it out “I HAVE CRAMPS, OKAY?!” and that’s not nice either. 😛

    Something that might help is note cards that say “I FEEL BAD” (with appropriate pictures if pictures help) and then with that set could be cards that list symptoms he has, like “my stomach hurts” or “I have a toothache” or “I have a headache”.

    These might be hard if he has trouble localizing pain or judging its severity, but at least he can tell you something feels bad. He also could bring you the cards if he feels bad and you read them off while he answers yes or no.

    Good luck!

    Liked by 1 person

    • That’s a great idea! It’s certainly worth a try. Thank you for taking the time to write. I have always believed that he knows what he wants to say but just can’t communicate it all of the time. He does also have problems with who what where when and how so I do try to ask in different ways.


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  5. Wow, how harsh of other autism parents to tell you that your own son does a disservice to the autism comunity for the crme of being happy! I’m so glad DC is mostly happy. I feel anger on his and your behalf, but also on my own behalf. I am in many ways more capable than DC, in that I’m of above-average intelligence and for the most part pretty effective with communication, but I too cannot live independently without support. If I live longer than my husband, or even should he be ill for a few weeks, I’ll need lots of care from strangers. I cannot do housekeeping or cooking, cannot travel out of the house independently (unless by paratransit when people pick me up from the bus), am not safe in traffic, have aggressive and self-injurious outbursts, etc. The mere fact that I’m more capable than some autistics, does not make me not really autistic. Same or even more so for DC.

    Liked by 1 person

  6. I am new to your blog (came here after I saw you visited mine). I both love and hate this post. I hate that your son cannot fully communicate how he feels and that you have to play a guessing game. So do we. Our son is very verbal but he has yet to master being able to tell us what’s wrong or why. I mean, he can tell us his stomach hurts, but why, we don’t know and neither can he. I like C’s idea of flashcards; we might incorporate that too.

    Like you, I began my blog to show what autism looks like in our house. We frequently hear that our son doesn’t look autistic. Hmm, I never knew there was a look! I get that on his good days he just appears to be a quirky, maybe slightly immature for his age “typical” kid, but he isn’t. We took our son’s story public in a local magazine earlier this year, and the response was tremendous. It amazes me how many people who know our kid and interact with him on a regular basis were so unaware of his struggles. That’s why I came back to my blog after staying away for a while. There are times I wonder if I should share as much as I do (and I hold back a lot) but if it educates just one person and lets them know that there are many sides and faces to autism, then I will keep at it.

    Thank you for sharing your and your son’s story and I look forward to reading more of your posts.


    • I get it – you love and hate the post at the same time. It’s difficult, especially when the communication is so limited. So glad you got a good response from the magazine. Yes, DC is happy almost all of the time so his struggles are not as apparent. He’s happy and that should be enough for me, but I’d also like to know that he is safe. That he understands danger and how important it is that he can tell me if something is wrong. I look forward to reading more of your posts . Thank you for visiting.


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