I’m grossly fat and tend to maintain either an unkempt or unconventional appearance, my personality veers between the leering stalker side of genial and the apologetic spineless side of wicked. I’m not exactly your alpha-catch.
I sometimes lay awake and worry that this affects how people treat my daughter.
There has to be a reason why
some a lot of professionals act like you just stepped off the numbah nine bouncy bus from Badonkersville when you say you believe that your child is ‘different’ or whatever awkward word you choose because you are possibly saying out loud for the first time that you, your child, your family need help and understanding because something is not quite…
My first attempts at approaching the GP worried about daughter were met with suspicious and dismissive reassurances. He was more concerned with the lingering mild depression I was suffering (traces of post-natal depression) after daughter’s traumatic birth than with my concerns about daughter’s well-being.
[Side note: if you are going to leave a comment about your theories on traumatic births and the bad autism, thank you but fuck off and don’t bother…]
When we finally got to a paediatrician, he pretty much laughed us out of the room with a top line diagnosis of “spoiled princess” (yes, he actually said that), which he expanded to “only child to older affluent and indulgent professional parents who needs some tough love”.
Hhmmnnyyeaaaahh. Of course.
We got all dressed up on daughter’s birthday having cancelled the prearranged activities to attend the long awaited paediatrician appointment and got a diagnosis of “brat”. Daughter could not be less of a brat, sometimes I find myself cajoling her to let go and misbehave, just a little bit, she is so not a brat.
To test for daughter’s sensory issues being real (or part of her hysterical mother’s made-up world again) he called her name and then said “BOO!” in a loud voice. As she didn’t freak out and cry then he concluded that she didn’t have sensory issues.
I. Shit. You. Not.
For the other things we were concerned about, he made her “do a pinkie swear” not to do them any more and pronounced her ‘likely to be cured’ and for us to return in a month for a review.
Hhmmnnyyeaaaahh. Of course.
Or maybe not, Doc, seeing as you are possibly less informed about autism than a worm.
Give or take the appearance issues, I am a fairly confident and articulate higher-educated ex-career woman living in Croydon, borough of Greater London in the UK in the 21st century. Just thought I should make that clear.
In trying to deal with some of the NHS professionals involved in the diagnosis process and other aspects of my daughter’s healthcare, I lost all self-belief that I could communicate effectively at all.
Can you imagine how hard it is for someone less confident, perhaps very young, less well educated etc to advocate for their as-yet-undiagnosed autistic kid today? Bejeezus.
I wish I was alone in my long and winding road to diagnosis for my daughter. Sadly nope.
So when you finally get a diagnosis, you end up slightly desperate and neurotic at a parents’ support group where parenting an autistic child
is probably all you have in common seems to definitely be, in my case, all I have in common with the other attendees. A lot of parents are a bit ignorant, or should I say a bit outdated, about autism.
I do like the parents’ group. I might go and seek a different viewpoint, or just camaraderie. At the same time, its very nature worries me, full of deficit-based language and deep sighs about all the struggles. In my heart it still feels like the whole neurodiversity ‘thang’ ain’t really hit home yet.
There are conversations about when and how people are going to tell their kids they are autistic… for me, always a (bad) sign that a parent is not cool with the fact their kid is autistic (yet, hopefully just yet).
The other week, I completely got why.
I (reluctantly) attended a three-day “ASD Awareness” course for parents* and overall there was some great content. I did genuinely come away with new ideas on how to better support my daughter and I think I’m already pretty well read on the subject.
If you need a pointer on what to read about autism, start with Parenting Autistic Children with Love and Acceptance and check out The Thinking Person’s Guide to Autism and then follow links onwards… for specific behavioural support, contact the National Autistic Society, not some private therapist who’s going to try and ‘normalise’ your kid. PLEASE.
So overall there was some great content but the introductory session, led by a senior clinical psychiatrist from the CAMHS team (Child and Adolescent Mental Health Service) of our local NHS trust, was frankly appalling.
I thought most informed people now refer to being “on the autism spectrum”, not “having autism spectrum DISORDER”, I thought we’d dropped the D. Autism itself isn’t a disorder. The only people truly qualified to make this call are autistic adults and that’s what they say.
Amongst other crassness, she said “at risk of having ASD”, a highly biased, negative and derogatory phrase. She repeatedly said “difficult” where “different” would have imparted the same information with a radically more positive bias; she also compared autistic traits and behaviours not only to “normal” (rather than neurotypical) but “human”.
I paraphrase slightly, but at one point she basically said that autistic people do not have certain skills that are necessary for being humans.
I refrained from countering that perhaps all clinical psychologists are fundamentally a bunch of c*nts.
So off go the parents of another 15-odd autistic young people, newly armed with loads of great information and bits of paper and contact details for excellent support services, but all couched in the ‘knowledge’ that their kid is officially defective, sub-human, and simply perhaps just a bit shitter than all the other kids.
Same next month.
Just before the course ended, I did “my usual” and piped up with an unsolicited speech on neurodiversity, and how parents can help by listening to autistic adults as well as their own children, and find some time for campaigning and spreading understanding etc…
Maybe I went too far and scared everyone off. Maybe suggesting to those who were angsting about how/when to tell their children that they are autistic that they might need to challenge their own feelings (ongoing prejudice) about autism was a bit ‘tough love’.
Some of those parents will have the courage, strength and intelligence to realise that their kids are not lessened by autism. Some of them will buy the books written by autistic adults not just by the paediatricians and psychs and fellow warrior parents and the like.
In reality, against a prevailing majority of people who view autism as deficit (and something that perhaps one should test for in pregnancy and screen out like Down’s Syndrome), many of those parents will be working long and hard in every spare moment to simply find out, and to fight for, their child’s basic rights (let alone having their needs fully met in a positive and inclusive way).
They will not be able to get past the deficit-model, spending so long identifying and exemplifying the weaknesses, gaps, failures that need statementing (or should I say ECHP’ing) and reviewing and appealing and tribunalling and constantly reinforcing and repeating and… awful.
And worse, after years of bounced referrals we finally have an opportunity to work with CAMHS but now I’m pretty uncomfortable about it, seeing as how archaic in thinking their senior staff are… we will see.
* CAMPAIGNING SIDE NOTE: in theory, I attended a course for parents of newly-diagnosed kids, although all in the room having had a diagnosis for well over a year, only just reaching the top of a ridiculous 150-family-long waiting list; and the significant majority having only received a diagnosis for their child when aged 6++ having spent years being ignored and fobbed off by medical staff – GP through to paediatrician – and criticised by school for their bad parenting etc… I fear and feel for all the kids whose parents didn’t win the battle, I know myself it can be so desperate and damaging, I know of parents who are still fighting relentlessly for support for their kids aged 8+, going on futile 12-week long parenting courses to “prove it’s not them” etc; such a crock of shit…