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.