When you live at the high-functioning end of the autism spectrum, there are some choices that you can make about telling people your child is autistic. A very lovely and articulate blogger I know, made a comment on yesterday’s post that is poignant and rings very true to me. This is Rachel Cohen-Rottenberg’s comment:
|When people say that the autism spectrum is too “wide,” what they’re often saying is that they want their higher functioning children to escape the stigma of autism. I can certainly understand the feeling — after all, what parent wants his or her child to deal with stigma? — but I don’t see that it ultimately helps the kids. …What helps the kids, in the long run, is to do just what you did — to talk about your son’s autism openly and honestly, and without shame. Why should you not? You have a beautiful, sensitive kid that any parent would be lucky to have. There should not be any stigma attached to autism; it’s just a condition, like any other. Trying to evade it while leaving more severely disabled people to carry the stigma seems entirely wrong to me. Better to erase the stigma altogether.|
Rachel always makes me think. Her blog is here. For those of you who read here and who don’t know her, she is a phenomenal and intelligent woman and author of “The Uncharted Path – My Journey with Late-Diagnosed Autism”. Her blog and her story are highly recommended reading. And her comment inspired me to write this post.
The part of her comment that struck me is the word “stigma.” I have never heard that word describe what is so intricately part of my life until I heard it in this comment. It finally bit me and made itself known. It is an ugly little word.
Here is how stigma is defined in the dictionary: “A mark of disgrace or infamy; a stain or reproach, as on one’s reputation.” The thesaurus says it means “shame.” Sadly, I think a lot of people view autism in this way from the outside, looking in. That is where judgmental nonsense and pity originate.
I don’t know any parents of autistic children that are “ashamed” of their ASD children. Embarrassed – sometimes, yes. Ashamed – never! We are the opposite of “ashamed”. We are proud of our beautiful children. So, why then, do we hesitate to tell someone that our child has autism? Well, good question. Our choices, if and when they are made to conceal the diagnosis, affect perceptions of what autism is to the outside world.
My son is at the high functioning end of the spectrum. For the most part, he does not stim physically other than by wiping his mouth with his hand. He is verbal. He can speak in complete sentences and answer appropriately, when his attention is there. So, he can pass at his age without people questioning, right away, his differences.
If I hesitate to share my son’s diagnosis, I contribute to the outside world perception that autism is only as it appears at the severe end of the spectrum. The true nature of a “spectrum” will be lost without sharing the perspectives of the high functioning, the “invisibles”.
Looking at the severe end of the spectrum, you can find really beautiful, articulate people with no cognitive impairment. Yet, the behaviors of these people is without a doubt, different. Because of their difficulty in communication, they are often written off as cognitively impaired, even when they are not.
The people who fall in the severe end of the spectrum have no choice in revealing their presence on the spectrum. Yet because the behavior can be so intense, there is a misperception by those on the outside, that there is a cognitive impairment. One of the most interesting and beautiful people on this end of the spectrum is Carly Fleishmann who can be found here. She has severe behaviors yet is completely articulate as she demonstrates through her typing voice.
These people do not hide their autism because they can’t. Whether they would choose to if they could? I don’t know. I do know that Carly said she would be lying if she said she did not want to be a “normal” teenager even though she is happy with who she is.
When I responded to Rachel’s comment on the blog, I told her that I think she is ahead of her time. I believe that people will be smarter, and thus, more kind and understanding in the future. And I do believe things are improving. Autism is a word we hear more and more often. Yet, even if the word “autism” is more known, is the meaning?
How can I contribute to making that meaning less stigmatic? Well, yes, as Rachel said, the way is by making the face of autism include my son’s out there – beyond my walls, beyond the safety of the autistic blogging community – in the real world. My son has a disability. He is genuinely beautiful, innocent, smart and quirky. And he should be proud of who he is. And of course, I am.
The problematic part is that there are still so many who do not get it. So many people who have no interest in getting it. And there will always be those who do not get it and who will be within my son’s world – in school and in the communities in which we live and play. To reveal his disability fully means subjecting him to potential bullying, teasing, mocking and ignorant behaviors. Putting awareness on one scale and protecting my son from all these things on the other – how much does one weigh over the other?
I think we are capable of revealing the disability on the high functioning end of the spectrum, but whether that is outweighed by the potential harm we might do to our child’s self-esteem, image, friendships and safety is a question in my mind in the very non-utopian society in which my son must grow up. I have a feeling that I will err on the side of protecting my own child at the young age of 4 or 5 but I can’t even say that for sure. It may be more healthy for the children with whom my child grows up in school, to know his disability from the beginning. At a younger age, his peers may be more likely to be accepting of his differences.
And of course, as he grows, the disability may reveal itself. Shall I help to reveal it in the name of removing a stigma right now? At age 10 or 12 or 14 or 16? Should my child decide whether it should be revealed when he reaches a more mature age? It’s his/her life. What do you think?
Do we contribute to removing the stigma as the opportunity arises individually? Make it generally known so as our children grow up together, they will have always known and hopefully accepted it? Or keep it quiet altogether and hope the child blends? I would love to hear how you feel…