What’s in a name? that which we call a rose
By any other name would smell as sweet.
Act II Scene II Romeo and Juliet by William Shakespeare
In May 2013, the DSM V (Diagnostic and Statistical Manual of the American Psychiatric Association) changed how autism was diagnosed. One of the biggest changes was that it did away with the diagnosis of Asperger’s Syndrome. Instead individuals like PanKwake are merely referred to as ‘high-functioning.’ But that is not accurate, fair or right to her…or to us parents.
The truth is that I have about as much in common with parents of those on the non-verbal end of the spectrum as I do with ‘normal’ parents…maybe even less so. I am not to discount their struggles. I am grateful that 90% of the time PanKwake can tell me what she needs/wants. I realize too that I have way more to be optimistic about her future than they may. I will not even pretend to say I ‘understand’ their reality…I do NOT. And I will not demean their reality with sympathy or pity. I will say I admire your courage on your path.
But what this ‘new’ and easier for the professionals diagnostic criteria fails to understand and capture is that the difference between my child and theirs is so great as to be on a different plane. The professionals claim that this is covered by the word ‘spectrum.’ That does not do it…this is no number line with non-verbal at one end and ‘normal’ at the other with PanKwake and Aspie’s somewhere in the middle.
It is apples and oranges, folks.
While I may have a small taste of the non-verbal struggles when PanKwake is in the middle of meltdown and cannot for the life of her tell me what she needs/wants. But I cannot appreciate the joy of exchanging a card for a glass of juice for the first time. Neither can that parent, whose child ‘looks’ autistic, understand what it is like to be judged every single time you leave your home. For your child to be ‘naughty.’ For you to be a ‘bad’ parent. When people can ‘tell’ something is different, they are most often compassionate, understanding and caring. They will go out of their way to help you. I learned that when I dated a man, who was wheel chair bound due to MS. But those exact same people have no problem looking down their noses on you and your ‘naughty’ child.
The truth is that autism is not that straight line…it is much more like this…three dimensional with as many points as there are individuals with it.
What is more this new model of one-size fits all linear ASD means that those like PanKwake are left on the outside looking in. I used to go to a support group called ASD4Tea. I quit because I have about as much in common with them as I do the local Mums club. We are dealing with different issues. But the organization that runs those meetings…gets to neatly tick off the autism box without ever meeting our needs. That is a hundred-fold more true for the ‘major’ autism groups is this country…they are all about the more severe on the spectrum. If you look at their newsletter, Asperger’s gets two-inches on page 3. We went to the Autism Show last year and probably will again this. BUT it is all about them.
And I hate to say it, but that is what lumping all of them together does….it creates an US and THEM mentality where we are fighting for different goals and resources. In fact, I was first inspired to write this by a blog I saw on my Twitter feed. The woman had three daughters at the other end of the spectrum. She was talking about how angry she got when she saw words like ‘acceptance.’ She specifically hit me hard when she spoke about seeing autism as a ‘blessing.’
I do…I teach PanKwake that she is a SuperHero…the real X-Men who like Jean Grey have super powers that she needs to learn to train. I even say that she is the next jump in human evolution…homo autistica. But I am changing that…homo aspergeria.
I get what this woman was saying…she fears what will happen to her daughters when she dies. I look forward to PanKwake growing up…believing that the older she gets the more she will have to offer us poor ‘mortals.’ I cannot understand that woman’s pain. But neither can she pretend to understand ours. And professionals lumping our children together is the same as putting asthma and lung cancer together. They may both cause shortness of breath. They may both affect the lungs. But that is about all they have in common.
It is not fair that woman has to feel angry about the word ‘acceptance.’ BUT neither is it fair that those of us with ‘high-functioning’ children are dismissed, expected to force them to just ‘act normal,’ go to ‘mainstream’ schools, and have no support group of our own. NO voice. Not to demean the struggles of those parents…but we have totally different needs and wants for ourselves and our children. And ACCEPTANCE for who and what we are is chief among those.
When PanKwake was first diagnosed, I was relieved that it was by DSM-V standards as ‘high-functioning’ (which is itself disrespectful to what…’low-functioning’?). I was happy because I thought it would make accessing services easier. But the more I learn and see the more I want to scream…IT IS F’ING ASPERGER’S! THERE IS A DIFFERENCE YOU, IDIOTS!!!
Because calling a lily a rose does not make it so…not all flowers are roses…and not all Asperger’s is autism.