A friend of mine has been going through a rough time.
To those of us who know what life on the spectrum looks like, and who know her and her family, it’s been no great surprise to find that her youngest son is autistic, and she and her oldest daughter, at the very least, have Asperger’s Syndrome, if not high functioning autism*.
To them, however, the news has ben devastating.
I’ve mentioned before how very empowering and useful our diagnosis has been to us. I hope it will turn out to be the same for her, as well, and I wrote the message below for her, with that end in mind.
I don’t mean to diminish this situation in any way. I know that, in every possible way, we are enormously blessed – far beyond what we could ever hope to deserve. I know that many who walk this road have had a much tougher time than us. I know I cannot hope to understand, intimately, what that must be like.
And I don’t pretend to.
I know that I have days where I want to sit in the corner and sob because I just can’t bear another blank look of incomprehension, another unnecessary argument borne in misunderstanding, another three-hour melt down in which I can never allow anything else to be more important than the crisis facing the sobbing child before me. And
I know that these small hurdles that are the end of me, some days, are less than the smallest blip on the radar for some families. And that includes my friend’s family.
But I also know that the world needs minds like these. And – more than that – it needs acceptance* of these beautiful minds, and support. Not resistance.
My dear friend,
I almost want to congratulate you on having Asperger’s Syndrome. I came to the same conclusion about myself when I started this journey.
I was lucky to have two parents on the spectrum: a zany and extremely extroverted artist mom and a classic Aspie engineer dad. They don’t see how alike they are through their very different personalities. But all my personal study has shown me that common traits like depression, bipolar disorder, ADD, creativity, extremes of extroversion or introversion, attention to detail/OCD, engineering and social skills that don’t come naturally all point to the same thing: the autism spectrum.
Because my parents always felt like outsiders, and because both have formidable intelligence, they felt that our independence and uniqueness were much more important than trying to conform to society. If anything, they actively discouraged “being normal” in favour of “being interesting”. So understanding and accepting our Asperger’s has been less difficult for us than it is for many people. We see it as a blessing: a special and unique way to see the world. A way the world NEEDS to be seen in order for us to progress.
I really believe that once we can accept ourselves we can be so much happier with who we are, and also make a significant contribution. I hope this journey turns out to be a good one for you. As you say, the label doesn’t change what is. But it does make it so much easier to accept it.
And when you have a melt down, which we all do, it makes it a lot easier to understand and work through if you give yourself the grace to just feel what you feel in that moment. Melt downs – and all the challenges we face on the spectrum – are the ways our mind uses to tell us it needs to be taken care of. Whether that means taking a break, or establishing some boundaries, or even letting go of the things that weigh you down, you have the right to make those changes so that you can be as whole and healthy as you need to be – both for yourself and your family.
*I know these terms are clunky and insufficient. “High-functioning” implies so may things that just aren’t appropriate to the people with the label – and their lack doesn’t apply to people who don’t qualify for the label. “Acceptance” implies a coming to terms rather than an appreciation. It’s simply not adequate. But it’s the language I have available right now. Please don’t let offense at my hurried laziness rob you of any happiness.