Reading deeply into Asperger’s, exploring it in myself like opening a box of mysteries and treats, I’m processing so much around recognising signs of neurodiversity in family members. In my parents, most certainly, siblings and nephews yes and in my daughter…not so much, almost thankfully since it will be easier for her but certainly in terms of predominantly male functioning of the brain and around the complexity and breadth of her intelligence.
The deepest pool to plunge apart from myself is recognising it in my mother. It has done so much to heal old wounds (as with my father) but here lies the big one; the issue of touch in this context. It seems far too black and white to say that people on the autism spectrum don’t like to be touched, as some studies have suggested (as my post will surely demonstrate) but there is certainly a difference in the way they respond to it.
And intense though my love for my mother was, and hers for me (I finally realised) over the course of 28 years we almost never touched more than in passing. As a young child, she was brusk, dismissive, I would long to sit on her knee but knew not to go there since she was awkward around contact, giving the impression of being too busy or not wanting it. Love was shown through a robust, evasive set of gestures and behaviours and through the power of her deeds but not through the skin. Something must have happened, though I remember not what, and she began to reach for my hand occasionally when we had had a fun time shopping in my teen years, perhaps under the guise that we were crossing the road and she was seeing me across safely but then held on for a while afterwards as we walked down the street. Then she began to kiss me, pursed lips-style, when I went away to university (no bear hugs, almost a strain across the airwaves) but nothing too demonstrative. We wrote letters almost every day and the phone would ring off the hook but there was always this physical barrier between us. “What do you get when you put two people on the spectrum together…?” sounds like the beginning of a bad joke but I now regard it as rather tragic, in hindsight.
The saddest realisation came to me when I remembered my deep fascination with her lying there dead on the hospital bed, when I was 28. She had been diagnosed with liver cancer 8 months earlier, age just 68 and we had been through months of silent, undemonstrated pain together yet even in all those visits to be with her in my childhood home, I can so clearly recall wanting to hold her hand, wrap an arm around her but, being such alien behaviour between us, I knew somehow I shouldn’t…not now, after all this. It was as though to go against such a concrete rule between us, I would break her, perhaps both of us. So I would sit close to her and briefly feel the press of my thigh against hers, my hand brush her side…then being told, more often than not, to move over, give her space…and it had to be enough. So when I got to that hospital room, too late…I had travelled 150 miles to be there…and I was left alone in the room to say my goodbyes, I can recall feeling vaguely guilty, weirded-out by my desire to touch her, to stroke her skin as though she was alive. I can still remember the feeling of her legs, not quite warm, fleshy but oddly stiff and also knowing…checking with my intuition…she was gone. I had wanted, in those moment, to take away a memory of her, to bottle up enough to last the whole of the rest of my lifetime without her and this is what I got.
So when these thoughts came to me, spurred by all my thoughts around a book on Asperger’s that I am reading, just days after my own post Rigor Mortis described my own propensity to go into such rigid pain, with my fibromyalgia, that I can hardly move, caused (I believe) by the very same mechanism of glycolysis in the cells as occurs after death, it was as though a large clanking piece of my understanding shifted into place and a light began to dawn. Was this it? Was this why I have mimicked into my own cells a feeling that is so alien to life; as a part of my mother that I had committed to memory…from a lingering touch that was long overdue and not really her when I finally got there yet I had longed for it for so long, I had somehow embedded it in there, as me?
I’ve written before about the importance of touch in the earliest years of life and how an absence of this, especially from the mother, can wire the HPA axis differently, setting in motion a lifetime of over-reactions in the nervous system for those susceptible. For more on that, read my post Held and Michael Jawer’s referred to book “The Spiritual Anatomy of Emotion: How Feelings Linke the Brain, the Body and the Sixth Sense”. I felt a touch guilty after writing that post in case it made my mother sound like a bad person and she wasn’t at all; she was, in many was, the most compassionate, loving and kind person I ever met…she just struggled to express it in conventional ways. Deeds were her things, and she had opinions which, often, came out too loudly…another classic Aspie trait…and she spoke straight to the point, there was no mincing of words. Many people didn’t get her, avoided or flinched from her which was so sad to see when she was always the first to be there for them and yet I got her…we got each other and maybe that’s when we started to touch hands occasionally, in those years when the other siblings had left home and I had all her attention.
I think, perhaps, she realised by then I had some of her quirks; that I would have some of her struggles since she seemed to worry about me much more than the other three, long into my twenties and now I get the reason for that more than ever. Its wasn’t that I was the youngest, it was that she saw us both as a type and that type doesn’t get it easy in the world. She was so worried how I would fare after her death, giving pep talks to my then-partner and, I suspect, my siblings; urging us to stick together but it was me she kept airing her concerns to in the times when she was lucid, between episodes when it was as if she had already left her body. She would never have considered autism, probably never heard the word Asperger’s in her life and yet she knew, somehow, that this was us and we so need to find a safe place to be ourselves in life, as she had found with my father, the set-in-his-ways older man.
I too struggle to be demonstrative with touch and am economical with it amongst friends. Some, if they indicate and I am at ease enough with them, may get a hug but it’s rare since I left the circle of friends that used to make a point of grand hugging and face kissing on arriving and leaving, as my friends have thinned out. I think, what is key to someone on the spectrum, it has to feel genuine, not like a social nicety, a flamboyance of extraversion or a tribal behaviour that says “you’re in” the pack (for now). My mannerisms make it clear I am not open to this with virtual strangers and I grin and bear it with inlaws (I’m pretty sure they sense my discomfort and hope they don’t take it wrong). My siblings and I have instigated the pursed lip kiss and a cautious yet heartfelt hug since my mother died, since we see each other so infrequently. Those friends I have now (and yes, they are thin on the ground) are not really the touchy-feely type and perhaps that’s because they are more like me. In all honesty, I spend more time hugging my dog or trees than most people.
So, really, contact is reserved for my husband and daughter but in rearing her I set out to be quite different to how my mother was with me because I knew, somehow, that was important for her to thrive. When she was born, the strict hospital rule was that she had to be kept in a crib by the bedside when I was lying down or asleep but, the plus of a private room, I broke that rule from the outset, my ear always alert for the nurse, and we were never apart for a moment. So, though its not my natural domain (yet I confess it was easier with my own child who I felt so drawn to show affection to and protect) I gave her a great deal of contact, cuddles and kisses as a baby and toddler and even slept with her for a very long time, having read so many books on the benefits of shared beds. Yet even this feels like my neurodiversity in action; I had researched the topic, learned the health benefits and, wanting to avoid some of the traumas I had had, did the logical thing, to the letter. Later, as she got bigger and demanded more and more of my space, still wanting to sit or lie on top of me as a teenager for instance, I struggled much more, not least because by then I had fibromyalgia so I spent a lot of time asking her to give me more space….then feeling guilty. Now, we seem to have reached a good place where we touch just enough and that door is always left open, hugs are always there when needed yet we respect each others need for autonomy. It feels like we have a balance and we also express love with direct words a great deal, which was again so very sparse in my relationship with my mother.
This feels like such challenge territory for those on the spectrum and yet with touch so important to future health, it’s not one that can be easily stepped around with just a wing and a prayer. Not only does it alter the way we are wired and the way our immune system functions, contact with other humans is our most potent form of healing and its just so freely available; to ignore this potential is a crime against ourselves and each other. It feels like no coincidence to me that, this morning, my husband cuddled me as I was waking…for the first time in a while since I think he has been afraid of my fragility since my back episode…and I fell back to sleep and then into a prolonged meditation that felt like a magic carpet ride. I spent an extra hour and a half in bed after he had gone to work; unheard of for me and yet through the lucid dreaming and moments of briefly resurfacing, I knew this was the best medicine I could have had, nature’s own dopamine inducer, far stronger than any man-made drug (see here for 10 Science-Based Benefits of Hugging). Thankfully, my husband is a bear hugger and hugs all sorts of people when he gets the urge, often to their surprise, men included, so it is doing me such good to spend my life with him…even if I have to sometimes remind him I’m not too fragile to take it.
There are no coincidences, that much I know. The tying together of my recent thoughts on lactic acid induced rigor mortis in fibromyalgia, on Asperger’s, my mother, my parenting style, the phenominal magic healing touch of the cuddle I had today and (in contrast) my determined resistance to proffered medications at the doctors appointment on Wednesday (see my last post Somewhere in Time) because those drugs would STOP me from feeling enough and I would rather feel everything that is meaningfully mine to feel, even when it means pain…all these are tied together. If only we relied less on “drugs” as a culture and more on direct contact with one another…but respectfully and appropriately so, allowing for variations in each other’s preferences yet knowing that each child that is born is deserving of that kindly touch being offered as standard, at the very least, so that they can choose. Yes, even when it is hard for us, according to our own preferences, as a prerequisite of parenthood. And it is never too late to remedy a stalemate in contact, that much I have learned and yet wish I had learned it sooner and been braver where my mother was concerned; who knows how she could have benefitted from that contact in her final months. So much food for thought, so many barriers asking to be taken down, so much understanding to be expanded, all this diversity in each other to be embraced and honoured.