Lucky

“You’re lucky he’s so high-functioning.” – people who mean well

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I’ve heard it a few times over the years. And I’ve never been sure how to respond. I mean, the first time it was said was by someone in a park when my son was running and laughing. He was four and non-verbal.  So . . . not sure how non-verbal equaled high-functioning. Not sure how a complete stranger could make an assessment like that after observing my son for one minute.  Perhaps, since it was 1998, the person didn’t really know much about autism and thought it was a predominantly physical disability. Perhaps if someone had turned on a leaf blower and my son had started screaming, the person would not have said that. Perhaps if she had asked him his name and not received an answer from him, she might have thought differently about his functioning level. Not sure. I really didn’t have time to get into it with her. A second later, Nigel darted for the street, and I ran after him. High-functioning.

High-functioning can be misleading. Now, people see him as a high-functioning verbal teen. And that’s what he is. But what they don’t see are the years and years behind that high-functioning teen. The years of language acquisition through echolalia, over a decade of speech therapy, and daily life. The years of learning to filter sensory issues so that he can function semi-comfortably in various environments, even those as basic as classrooms, restaurants, grocery stores, and public restrooms. The years of learning appropriate and inappropriate behavior, with which he still struggles.

When people see a high-functioning verbal teen, they don’t see the daily medications he must take to manage his behavior and his anxiety. They don’t see the daily doses of risperidone and sertraline. They don’t see the subdued quality in his eyes that his mother has had to get used to seeing, because she knows it helps her son to achieve his goal of being mainstreamed in his local public school. Without the medication, he would not be able to manage his behavior. That is one way that high-functioning autism affects him. Being able to communicate is huge, but it is not the only issue.

When people see a high-functioning verbal teen, they don’t see how he’s been bullied and harassed and taken advantage of. They don’t see his trusting nature, they don’t see his lower emotional age, they don’t see his vulnerability. They don’t see how because he has to spend his days working so hard  – to filter the sensory issues of daily life, focus on trying to be appropriately social, and try to concentrate on school work – that he is exhausted. That sometimes it’s all too much for him, being autistic in this world.

Yet he continues to try, he continues to want to. He has a certain joie de vivre that I envy. Because of his autism, he doesn’t understand certain social obligations that will affect him very soon, as he enters adulthood. He wants to be an inventor when he grows up – an inventor of time machines. And while the finished product would most likely be quite lucrative, he doesn’t understand that he needs to have some type of income while he’s inventing his time machine, so that he can buy food for himself and pay for his shelter. When I try to explain this to him, he suggests that we should all live like our early human ancestors, in a very primordial sense. He says this with conviction, the same conviction with which he discusses his time machine. I don’t see that going over well in a job interview. High-functioning.

There are still so many things that others don’t see. Because they see a high-functioning teen, their expectations are higher, and while we should never sell our ASD kids short in what they can accomplish, we as parents know where the difficulties lie. We know how their delays in emotional and social development still affect them. We worry about how they will interact with people who don’t know them when we’re not with them to facilitate. We know that there are things about living in our society that they cannot understand, such as having a job and paying the bills. Yes, my son is now high-functioning, but he has fought tooth and nail (literally, sometimes) to get there. If there was any luck involved, it was because every time he’s wandered away or bolted into the street or lit something on fire, he’s never been harmed. So yes, to everyone who’s ever said that I’m lucky, I am.  High-functioning or not.

18 thoughts on “Lucky

  1. Cathy

    “we as parents know where the difficulties lie”–that says it all. Today, Ethan had his last day of school, which I know was stressful, and he held it together until right before dinner and then threw a huge fit b/c he couldn’t have high-sugar cereal for dinner. It’s just so stressful for them–trying to hold it together.

  2. Jenn Ethirveerasingam

    People are just so clueless. I don’t think lucky so much as determined.

    Love ya!

  3. Kate

    Good post. I had a woman the other day who went on and on about how blessed I was because I could talk and understand what she was saying. Yea, wanted to kill her but didn’t. Luckily haven’t had that happen to me much./

  4. melvin

    You are so very lucky to have Nigel, as is he to have you. And that lady’s lucky you didn’t give her the royal stink-eye and wedgie.

  5. Pweshes Mama

    Gosh your words ring true to how I feel almost everyday in dealing with Raiyan. It’s such constant hard work to make him look or seem “high functioning” in other’s eyes because only then can we feel more secure ppl will not view him negatively only because autism is viewed so negatively over here. I try really hard not to dwell on how hard Raiyan has worked and the fact that hardly anyone notice it as they seem to just choose to believe that’s naturally the way he is.

    But as you said, what’s important is for us to know and to never stop showing our appreciation for their hard work. we can hope that one day people will see how special they are and how lucky we are because of WHO they are not because of the “high functioning autism”.. we can only hope.. not expect though..

  6. Fearless Females

    I can kind of see what the person meant, and I certainly know what you are saying because I have said it sooo many times myself…even though no one has ever called me lucky.

    But when I compare my two kids, my son who is higher functioning and my daughter who is very low functioning (for lack of better words…) then I think of my son as my typical child.

    I know that sounds strange but it’s true when you are living with both sides of the extremes…

  7. Michelle S

    You said it all Tanya! Great post. I hear that sometimes too and it perplexes me. . . I think some expect him to be in a corner spinning plates and flapping and when the stereotypes aren’t there they don’t know what to say. It’s a lot of work and so so worth it.

  8. Michelle O'Neil

    The amount of time and effort needed (by both child and parent) to keep our high functioning children going at a “high functioning” level is often daunting.

    AND, no two “high functioning” kids are alike, so even other parents of “high functioning” kids might not know what the hell they are talking about when it comes to your kid.

    Each kid presents his/her own set of challenges. We should not assume luck or lack of it for anyone else.

  9. Carol

    When J was in school, the teachers/aides would get really excited about him, simply because he was verbal, and had extensive knowledge in his specific interests. It made no difference showing them the different reports from his psychiatrist, etc., because THEY were the experts (Sarcasm here). So, they kept pushing him into doing things that he was not capable of. Then, when he would get upset, they found him “testing the waters”, being uncooperative, etc. Pathetic!

  10. Tera

    Thanks for this Tanya. That’s EXACTLY it. I used to consider Kaeden high-functioning. Yet, over the years he has done more regressing than progressing in so many areas. Though he can speak and ride a bike and work on the computer, I no longer consider him high-functioning. But what’s it matter…high-functioning or not, these kids have a LOT to deal with, and thus, so do we. And it’s not just for today, but for a lifetime. I still have a hard time being grateful for autism. I just can’t get past the inflictions autism has caused on my son and our family. I don’t feel lucky. Yet, I have learned a great deal more about the world.

  11. Carol

    I wanted to add:

    I have a sister-in-law that used to be a nurse for the Regional Center (She made housecalls). She insists that J couldn’t be autistic, because he talks. Frightening!

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