Neuro-elephants in the NHS and beyond

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”.

Yes.

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’.

Hashtag awkwardsilence.

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…

17 thoughts on “Neuro-elephants in the NHS and beyond

  1. How totally frustrating. I hope this continuing saga you are involved in takes a more positive turn. I think you seem to have more common sense education (not to mention on the subject) than most of the professionals you’ve run into. Good luck in your quest to help your daughter.

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    1. Thank you! My daughter doesn’t need help in much really except dealing with those who influence her ‘fate’ and do so with such detrimental effect. Some people think I’m tired because I need a break from her, in reality, it’s everyone else that wears me out!

      Liked by 1 person

  2. Quick comment from a trainee c*nt who suspects she’s somewhere on the AS scale herself as well as having another disability and a grown-up disabled child. Oh hang on, is autism a disability? Or does it depend on the situation? I’m honestly not sure.
    From bitter experience, I can tell you that alienating the people you want or need help from isn’t a good move.
    If your daughter is statemented and getting the help she needs, then great.
    If not, the best way to get the help she needs is to get someone influential on side.
    Good for you to keep pushing and advocating for your child.
    The emotive language around anything that makes people stand out is medical model stuff and should be challenged. But equally I personally don’t think it’s helpful to become too politically correct and pretend your child isn’t different. Having experienced this from both perspectives, I think A healthy balance needs to be struck.

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    1. Hi there, wow – I think I need to review my writing ability!!

      I don’t think all psychiatrists are C-words, it was supposed to be ironic, in response to her statement that autistic people lack certain skills that are required for “human interaction”. Whatever your neurology or profession, I don’t think there’s any way that statement can be condoned or accepted or understood whatever the context.

      I appreciate your view on alienating people. I was successful professionally as a project manager, change manager, analyst, I spent many years making things happen when people and groups of people were apprehensive and often fiercely against changes to the status quo, etc etc. I am more than happy to ingratiate myself with people to get what I want.

      This is distinct from that. At some point someone needs to put their head above the parapet and say “this is wrong”. Taking the “I’m alright Jack” approach and looking after your own needs first, I get, but people need to work together or we just keep passing on the battle to the next lot of parents…

      The best way to get my daughter the help she needed was taking the decision to home educate her so that something as important as her intellectual development (and sense of self-worth) wasn’t impeded by having to conform in an environment that was hostile to her needs (sensory and social and more). I was not prepared to take any further risk with her self-esteem or mental wellbeing fighting a prolonged battle with her school. I know I’m extremely lucky to be able to do that…

      I know my daughter is different – she told me so herself – that’s not the problem. I won’t accept that she is inherently “difficult” though, NOR SHOULD SHE. Nor do I class her as less of a human than myself, NOR SHOULD ANYONE. Nor will I ever find it acceptable that a professional first looks to behavioural issues and parenting failure than take the time to listen and conduct a thorough and unbiased assessment rather than snap-judge a situation…

      Albeit an altruistic and fanciful statement, not based in our current world reality, it shouldn’t matter whether autism is a disability or not. I’m happy to treat people as they wish to be treated and genuinely try to respond to an individual as such. We ALL need help and support to manage ourselves and our lives in different ways in differing amounts at different times, we all have different aspirations.

      Anything else is prejudice and ableism.

      I do massively appreciate your comment – We have to keep debating this stuff!!

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  3. I wish this didn’t resonate so much with me, but unfortunately I’ve been on the receiving end of medical “experts” apportioning the blame for my son’s autism to me. Because I suffered horrific PND (which largely went ignored), was newly divorced and was alone and vulnerable, people decided I was neglecting my child because of my depression. I wasn’t – and it was another three years before I wore the social worker accusing me (in court! She took me to court to try and take my son away from me!) into bringing in Doctor Cooper (who you might have heard of; a wonderful, kind-hearted Scot with a firm handshake and one of the most objective minds ever – who sadly had to retire due to ill-health many years ago). He was obliged to spend an hour with my son before disagnosing him, but later told me that he’d known the second he laid eyes on him that he was not – as he’d been informed – dealing with a neglected child, but a child with possibly the most profound autism he had ever encountered. He immediately got one of his CPNs on the case, and he was hihgly instrumental in ensuring that the accusation of neglect was pretty much laughed out of court. A care order was placed to give my son and myself access to respite care and other support that we desperately needed.

    I’m sorry this happened to you and your daughter. You would honestly think that more is known about autism now than it was twenty years ago, so this accuse-and-dismiss attitude should have been done away with long ago 😦

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    1. OMG I am so sorry to hear your story. To be honest, our journey has been ‘mild’ by comparison to most… I’m not naturally political so unsuited to know what to do other than blog about stuff… I hope it helps somehow (eventually)! xX

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  4. Thank you. After a week of feeling overwhelmed with it all (in short trying to get my head around senco suggesting special school may be best for Joe as they’re not sure how long they’ll be able to meet his needs for, (he’s 6), and it may well be, but I don’t know…he’s 6 ffs), and the pervasive negativity, I really needed this. The attitudes of the ‘professionals’ make me want to scoop him up and out of the ‘system’ that seems so desperate to just see the diagnosis and not the child.
    Best of luck with CAMHS though 😊

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      1. I’d love to hear your thoughts on home educating – barrage or otherwise! … It is something that instinctually feels right to me for Joe. However, his dad is somewhat sceptical and thinks we need to give traditional school a chance. Which I have agreed with for the time being…

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        1. Ah OK!! I may pull together a blog post but in brief, I am child of 2 X teachers and loved school but my instinct always felt that was right for B, I will always regret it took her to have a complete breakdown to make me take that decision BUT also it does give me the knowledge that I haven’t made the decision lightly. There are tons of AS/aspie kids being home educated (funny that, seeing as the education system is totally NOT designed to accommodate them…) and thriving!! Where are you in UK? Somerset is that correct? XX

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          1. Hi, thanks for your reply – sorry for delay in responding!

            Yes, we’re in Somerset, and although the school have been helpful and supportive in lots of ways I get the feeling that they’re just ‘managing’ him, if that makes sense. School holidays are when he’s happiest and to see the anxiety reemerging when he goes back just makes me think there must be an alternative. Which of course there is – I think I need to get over my own self doubt and find a way to make HS work. And get his dad onside too…

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  5. OMFG. I went to the same type of 3-day course (North-East London borough). Same psychologist talking about other kids who are ‘normal’ etc. I nearly hurled, I was so effin mad. SO GLAD I’m not the only p*ssed ASD parent out there, at the ludicrous state of CAMHS and other ‘professionals’ being about 15 yrs behind, in the neurodiversity/pride stakes. THANK YOU!!

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  6. It is a sad reality that you have to be prepared to play the system to get any constructive help. I thank whatever powers that be for our fantastically supportive GP, without whose help we would have got nowhere. Over the years we encountered a paediatrician who asked ‘what’s wrong with him then?” A my intelligent boy stood next to her. To this day I treasure his response to her request to draw his family for her… jet fighter loaded with bombs.
    We got a second paediatrician, with gp’s help. What a wonderful man. So duly armed with a genuinely expert Dr with years of experience we took on the Senco at school. That battle was exhausting, she was obstructive and difficult. All the support I accessed came because I am a primary teacher in the same authority. Because I already knew most of the MALT team I by passed the school and got things moving. What it would have been like for us if I hadn’t been inside the system already scares me. I got my boy accepted for who he is, supported with the things he needs ( mostly understanding of sensory adjustments and and transition support to secondary).
    Some years later we watched a friend go into battle for her son, with the same Senco. Because she did not have insider knowledge it was appalling, even with our help she struggled as she could not speak to the people she needed as she was outside the system.
    It is no wonder parents choose to home educate, the battles are exhausting. And, whilst you are fighting your child’s distress each day is appalling. Thankfully the boy had teachers worth their weight on gold along the way . The hardest part of poor understanding of AS is the trickle down effect from adult ignorance to their peers. How are neurotypical kids supposed to know how to be natural when the behaviour of the adults around reinforces stereotypes.

    Gosh, didn’t mean to offload, think you hit a nerve there. But I agree with much you say and get angry at the perpetuation of professional ignorance.

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    1. Your comment about parents and the trickle-down effect to their children’s behaviour is SO on point… the subject of a future blog post!

      Another quote from the course: “Croydon has the highest number of home educated special needs kids in Greater London, despite not being the most populace” (groan)

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