I have observed that children with autism are usually placed in one of two major boxes. (There are many smaller sub-boxes but these are the main ones).
(1) The high-functioning kids are generally placed in the “He will be ok, nothing to worry about here, it’s only a minor diagnosis, they will do just fine” box and their parents are often assured that there’s nothing to be concerned about,
(2) And lower-functioning kids are often wrongly placed in the “Give him a happy life because he won’t amount to much” box and the parents aren’t given much hope.
And both of these boxes are so wrong on so many levels and neither of them takes into account the lengths that parents will go to to prove them incorrect.
When my son was first diagnosed with high functioning autism, people often said things like: “Oh he’ll be ok, my_________ (insert distant relative or friend of a friend’s child) has aspergers and they are the top of their class. Your son will grow up to be a genius, you’ll see”. (And in saying this they were totally disregarding my son’s invisible struggles based on some other child’s experience).
Or “Really? He ‘looks’ normal to me”. (As opposed to abnormal? Really?)
And of course: “My (friend whose mother works with a man whose cousin’s neighbour has autism) says that the best thing to do is…” followed by a long list of various supplements, vitamins, diet changes and medications because it worked for “that” child.
And I have had many other similar comments.
My personal favourite is: *Sigh*: “Make sure you give him extra love” (Like I was going to abandon him or something because he was a write off? Seriously? Were they questioning my ability to love my own child or were they resigning him to the no-hope basket without even meeting him? Or were they implying that love would in fact conquer all?
I really don’t know!
But I do know that not everyone who says things like this has malice behind their comment. And I’m not making fun of anyone here at all because I totally understand that people say things like this for a number of reasons. Even I have said the wrong thing to people about their child before, but I have learned a better response now that I am a special needs parent myself.
I now say: “And how do you feel about this”.
Because then it provides a platform for my friend to tell me what they really think and feel, and I can avoid putting my foot in my mouth by saying the wrong thing. I follow their lead and show a genuine interest in what they tell me because I know how much they just need a friend more than anything else at that moment.
I also know that 9 out of 10 people had the best intentions when they said these things to me and I personally appreciated any attempt at consoling me but I have now realised that there are many reasons why people respond in ways like those.
Some may have been uncomfortable upon hearing the “a” word and they projected their own feelings about how ‘they’ would handle their child being diagnosed onto me.
Or they may have tried to alleviate their own discomfort by smoothing things over by saying something positive instead thinking that this is what I was looking for. But they don’t realise how much I hate seeing pity in their eyes. It made me think that my child would have been a huge disappointment to them if they were the parents.
There are some who still believe that what we are dealing with is just bad parenting, and I’ve found that most of the time when you come up against people who think like this, I can’t change their mind anyway because they believe it so strongly. So usually, when I come up against this one: I just smile and walk away. I no longer waste my breath.
And sometimes, people comment this way because they are truly just tying to help and they really honestly don’t know what to say but they want to say something! And that is admirable.
But what really concerns me is when I am told that my child will do ok in life because ‘so-and-so’s child did and they have aspergers too’. Because by saying this, they are either (a) downplaying all of my child’s struggles that are often invisible and (b): making waaaaay too much of a generalised statement.
(And anyway – I already KNOW that my child will do well because I’ll be damned if I’m leaving anything to chance. And also because and what I consider successful and what society considers successful may be two completely different things anyway).
I am largely bothered when generalisations are made about individuals on the autistic spectrum because by making a general sweeping statement; you are lumping them all together and labelling them as a minority group.
Each individual on the spectrum is just that: an individual. They all share common characteristics and traits but each and every one of them is unique and gifted with different things. They are as varied as the sky is blue.
For example: My son is not a genius per say but he has a memory for Sonic facts that would rival even the manufacturers at Sega! But still, his IQ doesn’t place him in the savant category. Some autistic individuals are able to memorise entire chapters of books whereas Harley forgets a sentence two seconds after reading it but he is not dumb by any stretch!
Some children with autism have photographic memories whereas Harley does not but he can tell you exactly what he was wearing last Thursday after school. Different talents for different children. Similar in many ways but so very different at the same time.
Each of them brings totally different but equally as valuable things to the table so can you see why it’s wrong to place them all in the same box?
Harley gets disheartened when the little girl in his class who also has a spectrum diagnosis does so much better than he does in exams, class activities and in the playground, because sadly: he has learned to compare like with like. I am currently in the process of helping him to change his thinking in this area.
It’s considered politically incorrect to tell a woman that she’s pretty ‘even though’ she’s overweight and most of us have the sense to not say something so blatantly rude, but when a parent of a child on the spectrum is told: “it’s such a shame about the autism, he is such a good looking little boy”…it’s the exact same thing.
Most parents will admit that at some time, they have compared their children whether deliberately or not. I have done it! I have seen major chasms between developmental milestones and huge differences in coping mechanisms, mannerisms and even looks, but have had to learn why focusing on this is such a dangerous thing to do.
Just as I’ve had to learn how to treat my kids all as individuals, I see a great need for society to open their minds and hearts to discover that there is so much more to these kids than just the label “autism”. They each have their own personality, their own personal likes and dislikes and their own personal characteristics.
They are not defined by the label AUTISM but instead are a valuable member of society who just happen to have autism.