Sunday, 11 September 2016

Quis custodiet ipsos custodes?

Who will guard the guards themselves?

When seeking a diagnosis, there are a series of guards to get through first.

As an adult, in my area, this was relatively simple.
First port of call was my GP. A woman slightly older than me, who had been at the same school as me, knew my sisters and had seen for herself that I was different.
Second was a referral to a mental health nurse for a screening test (a short version of the AQ test) and interview, through which I passed to the next level, an appointment with a psychologist who then referred me for full assessment, which was carried out by two psychologists who understood that women with ASD present differently to men with ASD.

I was one of the lucky ones.

In many areas ASD identification for an adult is very difficult, GPs are often unaware that services are available to diagnose adults, many are (scarily) unaware that women can be autistic. Once through the GP adult women are often faced with experts who don't know that women can present differently to men.

In short, there are several gatekeepers to pass in order to proceed. And if any one of those doesn't have enough knowledge about autism, you do not go through to. the next level. Adults in need are at the mercy of experts who may not be experienced enough, but the only consequences are on the people seeking help, not those refusing it out of ignorance, and they either need to continue the stressful fight, or they give up, believing they are failures.

Then we come to children's diagnosis. Lordy Lord.

The same as adults, assessments can be a postcode lottery.

The process for assessment and diagnosis for a child will differ from area to area, but will follow a similar pattern.
For us, this process went something like this:

Teachers - we discussed our fears with PDA boy's teacher and then headteacher. This went on for several months.

Local authority educational psychologist - one with no knowledge of masking.

Referral to Parent Support Advisers (PSA) - very basic knowledge of autism, no knowledge of masking.

We then went through our GP who referred us to the developmental paediatrician at the local CDC.

We asked for a referral to an occupational therapist, but this was refused (we later went private).

Referral to CAMHS for suicidal ideation (see previous posts about the CAMHS debacle).

Referral to The Incredible Years parenting course (again, see previous posts).

The assessment itself (the one where vital information was omitted from PDA boy's report, and the results of his ADOS and the DISCO interview were ignored)

And finally on to the private assessment, by which time we were terrified of any more involvement, but knew that as secondary transition loomed, we had no choice but to crack on in order to get some understanding and support for the boy.

Parents feeling scared of the process, and worrying about continuing into it, is incredibly common, and the number of guards we have to pass adds to that fear, particularly as the first few we need to get through usually have very little knowledge of autism.

Teachers attend many training sessions, some of them about social and communication difficulties. I was invited to two of these courses. Information was very basic, and delivered in a way which seemed to minimise learning impact, and the focus was to come away with a certificate, rather than learning anything useful. In fact, when one teacher, having been advised not to insist that autistic pupils look at her, stated that she'd been a teacher for x years, and would continue to discipline her pupils as she saw fit, the course leader agreed with her, missing an ideal opportunity to improve life for autistic pupils at the school. This was a teacher who at that point had been attacked several times by autistic pupils, probably because of her distinct lack of expertise or willingness to learn in this area. These courses should be real opportunities for teachers to learn new skills to help their pupils, not, as is happening, another pointless tick box exercise resulting in another certificate to tuck away into a folder.

Having spoken to several teachers and SENCOs about the training they receive, it is clear that the information given is basic and stereotypical, and leaves out any mention of masking or atypical presentations, which leaves families of maskers and atypical children wide open to misunderstandings.

When a child does not present stereotypically, or they mask, and teachers are the first guards we must approach, it doesn't bode well for a successful start to the journey.

The next few parts to the process for us followed a similar pattern. The biggie for us being masking, and the wide held opinion that an autistic child will present the same in all settings. This opinion was held by teachers, PSAs, CAMHS, paediatricians and educational psychologists, despite there being evidence that masking is very common.

The long run up to assessment was led and handled by people who (in my opinion) were not qualified to do so.
Hence the question "Who guards the guards themselves?", because as far as I can see, no-one guards the guards. No-one holds them to account when things go wrong and families are left damaged, traumatised and alone in trying to help their child. I can't say this strongly enough, but this is Not Right.

As parents, if we are so worried about our children that we seek help, rather like going to a GP when we are ill and popping a few nurofens isn't cutting it, we should be taken seriously. We should be able to see someone who can understand the problems we are facing, or someone who is able to refer us to someone who does have enough experience to understand.
In reality though, our fears are routinely dismissed and we are blamed for our children's behaviour. Even when a diagnosis is given, it is common for teachers to continue to blame, and to doubt the child's diagnosis, even in some extreme cases instigating investigations into Munchhausens by Proxy (MBP) or Fabricated or Induced Illness (FII) as it is now called. In these cases, parents must fight with all their might to prove otherwise, often not able to fully clear their names, and all because they are trying to help their child, all because very often parents are the ones who see the problems most clearly.

I must point out again that some areas get this right, the assessment process is efficient and does not rely on parent blaming as a useful tool in proceedings, parents' experiences are taken into account and the child and family are supported well.
Going by the number of parents who have shared our experience though, I do wonder if those areas are in the minority, particularly when it comes to children in mainstream school who appear to be coping.

If I talk about this in real life to people who do not have any experience with autism, the overwhelming opinion is:

Teachers would know if a child was autistic. If they can't see it, the child is not autistic.

If a child has behavioural problems, it's because they're naughty, not because they are autistic.

We (the parents of autistic children) are looking too hard for problems, instead of focusing on the positives, we need to lighten up.

We need to be stricter with our children, you know, boundaries, firm boundaries, zero tolerance, all the time, and more crap like that.

Experts know everything about autism.

When these people are family members it can be frustrating, upsetting, hurtful, but we can attempt to educate, or we can choose take a big step backwards in order to protect ourselves.

When these people are the same ones who have involvement with our children, we are then in a worrying situation, and we don't have a voice against someone whose job and qualifications dictate that they know better, even if they've only spent twenty minutes with the child. The same child that we live with and spend countless hours loving, being their private inventive therapist, their number one advocate. We can step away, but that means stepping away from potential diagnosis and support, and in some cases stepping away or declining certain interventions can be seen as obstruction, rather than doing the best for our child, or preserving our sanity.

Sometimes it feels like parents like us can be treated appallingly, but receive no apologies, no assurances that this will never happen again to anyone, no offers to retrain people who have not been able to carry out their jobs properly (something which would happen immediately if a supermarket worker, or other job which has very little impact on someone else's life, had handled their job inexpertly). There is so much power to be held in jobs like this, with next to no understanding about how mishandling can affect a family.

As we are well into an age where actually autistic people are starting to be heard and are standing up to ignorance and damaging practices, I do hope that the unfair and unhelpful judgements made on behalf of struggling families will dwindle out and we can welcome a new era of better knowledge and understanding.

Sunday, 4 September 2016

Emily Brontë.

Today I read a piece in The Guardian about Emily Brontë, author of Wuthering Heights.

Article here

As more is understood about autism and women, so we can pick out more and more cases of women in history who are likely to have been aspies. And in my mind, this is fabulous. Sharing the knowledge so that more and more people can be aware that autism does not always equal Rainman, or Sheldon Cooper, or any other stereotypical male autist that society has been conditioned to recognise.

Society needs to understand that a diagnosis of autism, or even speculation of historical figures, is not a doom ladened knell of despair, is not a negative reflection on someone's work, is not a reason to think less of someone, is not a label (RAAAARGH! It's NOT a label, it's a DIAGNOSIS! ), does not mean someone is incompetent, is a lesser being or anything like that.

But this is largely how society sees us. So many people have it so, so wrong, and this is distressing for me.

I saw the Guardian article on Facebook, the comments beneath the article were more depressing that I can convey. They were predictable, but still shocking that some apparently intelligent people have such a low opinion of those of us with autism:

(Comments have been slightly changed, but the tone and intent are the same)

Emily Brontë can't have Asperger's because her writing is so good.

Denigrating genius as psychiatric trash. (I reported this comment - assuming that FB cares, that is - this comment was particularly disgusting).

Her understanding of society and humans means she cannot possibly be an aspie.

Ditto emotional depth (something no autistic has apparently).

Why oh why do,we have to label everyone nowadays? (Again, enough with bloody labels!).

I could fill pages with these types of comments, these horrible, ignorant, disablist, offensive comments, but I won't, because life's too short to focus on the tosh spouted by people offended that a beloved author ticked some of the boxes for autism.

However, it is obvious that society is under the wrong impression. Sure some autistic people may appear to lack in empathy, but equally some have too much. We still have emotional depth, and plenty of autistic people make huge successes of themselves supporting others, advocating for their fellow autistics, so somewhere along the line, society has got it wrong, or they are guilty of assuming that everyone with autism is exactly the same.

Rookie mistake, because:

If you've met one person with autism, you've met one person with autism.

Autistic people are a part of society, one could argue that society has been shaped in some part by autism, many of the greatest scientific discoveries were made by people likely to have been autistic.

When it comes to knowledge about autism, the very best people to learn from aren't always the qualified experts, you know, the ones that tell us about lack of empathy and male brains, it's most often the autistic people themselves who are able to give accurate, thoughtful accounts of life on the spectrum. Talks, books, blogs and more that prove our capabilities over and over again.

I think it is so important that we continue to take retrospective looks at history's great and notable people. As humans, we need to do this to further our understanding of ourselves and our peers. As autistic people, it is essential to be able to look in the history books and see that our community are representatives of the great and the good, in fact in many areas, those with autism are over-represented, thinking of the fields of IT, science and possibly the arts and music.

Society has a habit of trampling down those they feel threatened by.
But autism isn't going anywhere, and it's about time society faced up to the fact that we can and will be amazing.
Autistic children and adults are far more likely to be bullied and have low self esteem, we owe it to ourselves to see role models from the past and the present so we can all see that, no matter what society tells us, we are valued members of the human race.
Let autism be recognised and accepted wherever it is.

Emily Brontë may or may not be autistic, we'll never know for sure, but I for one would be thrilled to be a part of the same aspie community as such a talented, insightful, creative author.