It’s a little bit funny

this feeling insii-ii–ii-ide.

Or not. (especially as I am NOT a fan of Elton John).

Most blogs start with an apology for being absent but sod that, I’m busy and so are you. I post here because I want to and I will not, repeat not, add another ‘should’ onto my shoulders. [NB. never noticed similarity of should and shoulders – could be significant, at least in terms of where we feel the weight of those unwanted demands.] Neither will I try to trammel the wanderings of my mind into a “sewing blog” or a “home ed” blog (especially as Wee Bear is now at school, sniff). Real life, for most women my age, is way more messy and complicated than that.

Since we went to the ballet last year, we’ve had a confirmed “official” diagnosis of ASD for Wee Bear. ASD – the new DSM-IV guidelines have smooshed together everyone from a nonverbal, totally uncommunicative child with learning disability to the Aspie end of the spectrum which is not entirely helpful outside the non-NT (NeuroTypical) circles – or Autism Spectrum Disorder, but also with a complex presentation (i.e. she’s a girl). Let’s say it’s been a bumpy few years. And I am still at the stage of blaming myself. Did I eat the wrong thing? Was it being an older mum? Was it nursing for 2 years? Was it mixed-feeding? Was it the antibiotics that saved her life at 7 days old? Was it my insistence of wearing her in a sling for most of 2 years and rocking her to sleep for those few hours when she stopped demanding interaction? Should I have noticed that she didn’t put things in her mouth? Should I have taken her to the GP when she didn’t crawl, even though she walked at 12 months? Should I have gotten worried at 18 months when she stopped eating more and more things, when she refused to wear short sleeves, at the tantrums at the sound of the hoover or my violin? (that’s understandable I suppose)… So many tiny signs that my darling girl found the world a confusing, overwhelming, scary place.

I suppose the thing is that I do too. So it all made sense to me (and other family members).

Yet because of her great ability to communicate and to verbalise and to mimic and mask, her skill at drawing, singing, copying, it was all fine. Except it wasn’t. That awful cliche of “you just know” and even the classic “no one knows your child like you” is certainly true but it’s made a lot, lot more difficult if your ASD kid is a girl, is very “high functioning” (shudderful phrase) and you yourself are non-NT. I’m not diagnosed, no, but I tick most of the adult female Aspie boxes, although with the caveat that I tend to overdo empathic feeling until it overwhelms me and I run and hide from people until the spoon drawer is full again. That can take quite a time. For some people, it just never gets full again and I will admit that I do sometimes just have to lose contact with people because it’s just too much. If that happens, it’s truly me, not you. Truly. Sometimes I feel like a dog who can see the emotions of people like hazes of colour or smell (which fits with my inability to tolerate perfume of any kind) and to be honest, I can’t stand it. [Ponders the phrase “you are too emotionally smelly for me to tolerate”].

Right now, I’m being distracted by a mouse that runs back and forth across the steps to our garden. It’s super fast but my “notice everything eyes” pick it up and I go off for a second.

Back to diagnosis, ASD, girls and the question of my undiagnosis. Do I want to get tested? Partly, because I’m a geek and I like psychology and the brain and neurological difference is one of the potentially most exciting things that scientists are looking at these days. Potentially. Will I get tested? I doubt it. The waiting list for the only adult ADHD clinic in Scotland is massively long. I don’t even know if they have an adult ASD one. Most of my NHS psychological support has been in the form of CBT or counselling, not assessments. Women do face challenges as they get older that make a diagnosis a useful hook to hang our difficulties on: it’s not “us” that are failures, it’s a real difference in our brain. Not blaming ourselves for being different, for needing time to be alone and quiet, for needing the physical stimulus of walking for miles and miles, for having SPD traits that affect our lives… the boundaries between Aspergers, ASD, social phobia, clinical depression, OCD, they’re all blurring together, in academic research and finally, finally, it’s catching up and being talked about and wonderful women are saying “me too”. I might not be one of them but my daughter is. I want her to avoid the “side effect” disorders that seem to be comorbid with ASD: self-harm, depression, etc. If we can explain to her now about her difference, in a way that doesn’t use the word “disorder” in it’s description thank you, perhaps she will grow up into the full knowledge and awareness of her super powers and her amazing potential.

Meantime, I’m off under my rock to do more drawing and sewing. First up is finishing a smocked dress for Wee Bear that is probably too young for her but too pretty to leave unfinished.

p.s. do you like my fringe? I’m still getting used to it.

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