Sunday, 16 October 2016

A "Private" Diagnosis.

Yesterday I received a letter from school informing me of an upcoming parents' evening. Attached to this was PDA Boy's profile.

The wording of the first paragraph has left me with very mixed feelings and a healthy dose of self doubt.

The first bit of information that a teacher will read about my son is that he has a "Private" diagnosis of autism presenting as PDA. There is then a sentence pointing out that he didn't receive a NHS diagnosis as he was on the cut-off of meeting the criteria.

I don't think I'm being oversensitive (although self doubt is present by the bucket load) in reading that and wondering why there needed to be any reference to the fact that the diagnosis was private, let alone wondering why the word needed to be highlighted. That, coupled with pointing out that PDA Boy failed to be diagnosed through the NHS, points to the fact that it is believed that his diagnosis does not hold the credibility that a NHS diagnosis would, which, given many facts surrounding PDA Boy's diagnosis, and a whole set of double standards, is a very bizarre assumption.

A few years ago, my father was diagnosed with a dodgy knee (that wasn't the official diagnosis by the way) and very quickly had a knee replacement. This was all done privately. In the recovery time following the operation, at no point was it referred to as a "private" operation. There was no need, it was a diagnosis that identified the problem, and an operation to sort it out.

Now, to preempt anyone who's sitting there saying "But the problem with the knee could be physically seen, it's nothing like autism, which can't be seen, there's no comparison", well, you're right, ASD can't be seen, but there are lengthy questionnaires formulated to spot any autistic behaviour, alongside the ADOS assessment, designed to spot differences in social and communicative behaviour. These are carried out by NHS drs and private drs alike, the very same tests. To cast doubt on one diagnosis means to cast doubt over every diagnosis using the ICD10 or DSM5, both which are used in the UK to diagnose autistic children.

The doctors we chose to assess PDA Boy were both extremely experienced in ASD and PDA, far more so than the paediatrician and psychologists we encountered in our local CDC, they are both registered with the BMC, have or still do work within the NHS, both have the experience to spot the very subtle presentation that some children present with, yet their credibility is in doubt?

We have encountered opinions that we bought our boy's diagnosis, but this still doesn't stand up, because any private practitioner diagnosing children because the parents want them to would be investigated and struck off. The reports we received show clear evidence as to how the doctors reached the diagnosis. We had to pay for their expertise, something that was lacking in our NHS experience.

PDA Boy's NHS assessment (as I've discussed before) was a bit of a disaster. He masks, which as any parent of a masker knows, leads to difficulties. PDA Boy passed the threshold on both the DISCO and ADOS elements of his assessment, but his school observations over-rode everything that appeared in those parts of the report, something which the paediatrician and psychologist later admitted, when they accepted the diagnosis and had another look over his reports. Valuable information was left out of the school observations part of the report which would have shown evidence of masking and difficulties in school.

Had we chosen an unregistered doctor, using their own unique, unorthodox method of identifying autism (which some people do, surprisingly), then the use of "private" in a child's profile would be justified. This type of diagnosis is dubious and damaging to all private practitioners.

We felt we had no choice but to seek a private assessment for our son. We couldn't ask for a second opinion, as the case had been left open for two years, and as secondary school transition was coming up, we didn't feel happy to wait that long, so with the full support and understanding from our GP, we sought out doctors who could assess PDA Boy.

This is something I will be addressing at school, but it does leave me wondering why, yet again, autism (and other neurological disabilities) are not held to the same standards of other conditions. Why is it acceptable to doubt a diagnosis, or call it a label, or avoid diagnosis at all costs? PDA Boy's diagnosis may be private, but the evidence of credibility is in his reports and the depth of knowledge shown by the paediatrician and psychologist we paid to see.

To refer to it as a "private" diagnosis simply shows ingrained ignorance surrounding invisible disabilities.

Society, I think I have a problem with you.

It's been over a month since my last post. I have five draft posts which I'm working on, but I need to be in a better frame of mind in order to finish them.

In the meantime, this is something that has been building up and I need to get it off my chest before I can move on to some more positive writing. It's ranty, it's generalising, but from the things I've come across, it is an uncomfortable truth.

In the last month, I have been reading, hearing and watching things that are leaving a very sour taste in my mouth, things which leave me under the impression that people with disabilities are simply a drag on life, on society, an inconvenience that must be borne by parents, communities, society.

Society tells us to be ourselves, as long as it in a way acceptable to them. This blog by DragonRiko explains how this works perfectly.
We have the experience of having a child who ticks many boxes that are considered warning signs for suicide, but because he will only show this behaviour in his safe space (home) and surprisingly (sarcasm alert) won't disclose this information to a stranger who won't accept the words from worried parents, the obvious answer to them, and because they are the professionals They Are Right, is that we are dramatising the whole thing, making it up to cover up our shoddy parenting skills. Society backs this up, and if you need any evidence of that, look at any article about autism in the Daily Mail and go straight to the comments section. It might be claimed that the DM doesn't represent society's views, in my experience it does, but readers of more highbrow papers will find a more palatable way of saying the same thing, but the meaning is still the same.

Text books about autism are usually written by neurotypicals, often including flawed information (male brain anyone? Lack of empathy?) despite autistic people screaming out, desperately trying to help others to understand what it actually feels like to be autistic, and it doesn't always perfectly follow the textbooks. Basic qualifications in autism involve learning the most basic and stereotypical information about autism, no mention of masking or more subtle presentations. I've often thought that a support worker or teacher could learn far more by looking out some blogs by autistic people, or by asking the questions to autistic people in the community.

Autism professionals are very careful to refer to people as with autism rather than autistic, in order to serve their opinions that autistic is offensive, implying that a child or adult might feel defined by their autism (which would apparently be a Very Bad Thing), we are told that having autism is no different to having blond hair, or blue eyes, that it is only a tiny part of who we are, which is bollocks. Being autistic affects every single thing I do, affects everything PDA Boy does, affects everything his older brother does, and that's ok, that's not a bad thing. Except on the whole society perceives it as a problem, so it becomes a bad thing for us as we realise we are somehow defective, rather than accepted as different and appreciated for who we are.

Whilst a child or adult may appear to be functioning at an acceptable level, if they are unable to communicate their distress, and others are not allowed to advocate for them, which so often happens in schools, that person is at a much higher risk of developing severe mental health problems and burnout, which can leave a person very limited and unable to function at all.

On seeking answers, many people in a position of authority; teachers, support workers, autism professionals, will ask a parent if they really want to do this, if they want their child to be labelled. It's obvious that the thought of anyone being diagnosed autistic is abhorrent to the very people who should be the most understanding about how positive a diagnosis can be for a family, even if the only benefit (because let's face it, support isn't exactly easy to come by) is that a family member can be understood and allowed to be who they are, although too often a diagnosis can bring about a search into how to hide the person's autistic traits from society, as they will judge.

Over the years therapies, some life threatening, have been developed with the sole intention to make autistic people appear neurotypical, to attempt to slot autistic people into society, to try to cure them. This isn't led by autistic people themselves, this is led by experts who, whilst on the surface appear to have the autistic person in mind, are forcing NT ideals onto autistics as the only acceptable way to be.

Organisations with the most contact with our children are slaves to functioning labels, with very few exceptions they see a child apparently coping to be the definition of success (credit for this comment must go to another parent in a support group I'm a member of), despite the effects this has on the child and family. For families like mine, this is disastrous news for several reasons:-

A child who masks is generally denied any support, as to teachers/CAMHS/insert other organisation of choice, they are obviously fine, ignoring all evidence that masking exists and is a massive problem to many people.

Support services can be inaccessible as behaviour needs to be witnessed first hand, because parents' accounts are not reliable, and we need to go through more lengthy interrogations and distressing accusations of poor parenting before whoever it is decides that everything's fine, no support necessary.

And the results of this? Well, for my family, the results of this are a family barely coping, but too scared to ask for help for fear of what fresh hell this will unleash onto us. We are a family whose most efficient coping mechanism is to split up PDA Boy and oldest, which in theory sounds easy, but in practice, during the hours when both parents aren't available, or when one parent (usually me) reaches a point where they cannot cope, this is nigh on impossible, and relies on both boys understanding each others' needs, which during melty moments is as improbable as expecting them to understand String Theory. This is what we need help with, but due to the rigid expectations of those who hold the keys to unlock that help, we are not eligible for this support or understanding. We are put in positions where our only hope is to scrimp and save to see someone privately, for diagnosis and other support, but we are still judged for this (please see next post when it has been written!).

Society needs to see bold, obvious signs of disability, or it's assumed that we are faking or not trying hard enough, blue badge holders must prove their disability to the general public, or they may be left nasty letters in their windscreen, you must not walk into a disabled loo looking OK, even though you may have a disability that no-one can see and, shock-horror, you may have a good job and be well dressed and not fit society's narrow definition of what "disabled" looks like, if a person doesn't react in a way that conforms with society's expectations, they are wrong.

Society must be judged on how it treats its most vulnerable members (misquote accredited to various different sources), and right now, the UK needs to buck up. We live in a society where the vulnerable are being more and more marginalised, and the people whose voices are loud enough to be heard don't care and have no respect for those of us who are not round pegs in society's round hole, we are berated and looked down on for not fitting in perfectly, and like so many things, this is simply not good enough.