Tuesday, 28 June 2016

My Masking Child's Diagnosis.

Last week marked the one year anniversary of PDA boy's diagnosis.

PDA boy's diagnosis for us was in two parts. The NHS part and the private part.

Our NHS experience was......interesting, and kept us on our toes. I don't want to rant about the NHS, some things it is brilliant for, and for that I am very grateful - I'd probably be dead several times over without the NHS.

For autism though, it is a bit of a postcode lottery, some areas are brilliant, some not so. I always believe there is room for personal development and growth, particularly in an area where families rely on their drs to have their fingers on the pulse in order to get the understanding and support they need. In some areas though, when it comes to autism, this does not seem to be a priority, which seems very counterproductive, as in many cases a diagnosis is needed before correct strategies will be used, and a child's successful future is reliant on correct strategies being used.

With an autism assessment comes all sorts of intrusive interventions. One thing that struck me was that the expectations of all involved was that my husband and I weren't telling the truth. Questions seemed designed to catch us out, and many of our answers were disregarded. I particularly find this difficult to deal with, I am a lot of things, but a liar isn't one of them.

There were observing professionals visiting PDA boy in school, writing reports, watching his every move, but unfortunately many of the signs they saw were left out of the report that led to his non-diagnosis. My husband and I were told things during conversation when we were being quizzed at our DISCO (diagnostic interview for social and communication disorders), we were told that PDA boy spent most of the lesson with his head on the desk, not working. We were told he made a very literal joke that fell flat. We were told that after being moved to another desk to work, his communication with another boy was off kilter. We were told things that were consistent with masking, watching his peers, reacting a fraction later than others and louder than others. We found out after that it had been noted that his facial expressions in lesson time tended to be very blank.

None of this was included in his report, which ended up a strange document to read, with the ADOS and DISCO sections showing issues, but each area was summed up in favour of school observations. "No difficulty in this area".

The results of both the DISCO and his ADOS (autism diagnostic observation schedule) assessment were ignored in favour of a vote of "No, we can't see anything" by PDA boy's teachers, a parent support advisor and a lady from enhanced mainstream services, all of whom had only seen him in school where he masked expertly. They simply had no knowledge of how well some children can cover up how they're really feeling,

To top this, at a later meeting with the autism co-ordinator at the CDC, I was clearly told that PDA boy's issues were down to parenting, that my husband and I must both deal with him together at all times to show a united front (not sure what was supposed to happen with our other three children). I came out of that appointment broken. My confidence, grown from knowing how much things had improved at home for using PDA strategies, was in tatters.

Our NHS assessment period was a very dark time for us all, and one that I would be very reluctant to go through again should another of our children need it.

It took a few weeks to work through it all, doubting ourselves, unsure of the things that we knew were true.

We then looked into alternatives.

We approached The Elizabeth Newson Centre, who specialise in PDA, to find that they were fully booked and had closed their waiting list until they had caught up with themselves.

They recommended Dr Jo Jones (consultant paediatrician) and Dr Judy Eaton (consultant clinical psychologist).

Contacting them was simple and we had quickly arranged an appointment with only a few weeks to wait.

From contacting Dr Jo and Dr Judy, we then had a nine week wait, which was agonising. We went over and over PDA boy's reports, we doubted ourselves, we fully expected to be faced with more professionals who doubted what we said.

Thankfully, we couldn't have been more wrong.

The appointment was arranged for the afternoon of Thursday the 25th June. We had a three hour drive ahead of us, with a reluctant boy for whom the only positives of the trip were a day off school and a mega three hour game of mini punch, which he won by a mile after spotting a car transporter with (according to him) around fifty minis on board.

We met Jo and Judy and were brought into Jo's beautiful kitchen where my husband and I would talk to Jo.
After initial introductions, PDA boy was taken into another room where Judy carried out a WISC assessment (as he had already had an ADOS assessment which was over the threshold of autism).

My husband and I stayed with Jo in the kitchen where she asked us questions about PDA boy's history.

One of the problems with the NHS assessment was that both my husband and I are wafflers. We were so desperate to give as much relevant information for questions worded ambiguously that our DISCO interview took an hour and a half longer than predicted, and with hindsight, we still probably didn't give the psychologist the information she needed.

Jo was amazing at getting the exact information she needed, she asked questions then explained exactly what she meant, she stopped us when our ramblings were irrelevant, and recognised when we didn't understand a question and put it in a way we (and by we, I mean I) could understand more clearly.

In an hour and a half, we covered more, and Jo had more useful information than in the many, many hours we'd spent talking to the various professionals throughout the NHS assessment period.

After our interview and PDA boy's assessment, Dr Jo then carried out a physical examination on the boy, following which we went into the garden whilst the two doctors discussed the case.

My husband and I were called back in to chat, leaving PDA boy playing on the trampoline and watching a bees nest in an old apple tree.

The verdict was in. Autism with a presentation of pathological demand avoidance.

The relief was immense. The years of questioning ourselves and what the family was going through were over. Not only that, Judy had spotted how angry the boy was, despite him masking and mostly complying, she could clearly see that beneath his mask he was barely suppressing his anger. This felt like a major breakthrough. Someone outside of his immediate family had spotted what we see.

Both reports were received within a week of the appointment. Unlike the NHS reports, we fully recognised our son in the words of the two doctors, nothing was twisted, nothing ignored, there was nothing we could scratch our heads at, puzzled which child they had assessed. This was all 100% PDA boy.

I have such positive memories of this assessment. For the first time in years, we had the opportunity to see two doctors who believed what we were telling them, who didn't try to twist our words in a bid to prove that he wasn't autistic, merely badly parented.

We waited a couple of weeks to tell PDA boy about his diagnosis, to be honest it took that long for him to recover from the long journey and the assessment, so telling him earlier wasn't an option.

He didn't take the news well, and that summer, behaviour wise, as he processed this information, was very difficult.

A year on though, I can honestly say that the diagnosis has been very positive. PDA boy no longer believes he is evil or the bad one in the family, he does still go through difficult times and we are still finding it tricky to have appropriate support put in place, but finally, he is starting to understand who he is, and how to handle things.

He will chat happily to certain people about being autistic, and will answer their questions eloquently. At school though, he is still a closed book.

Knowing he has PDA, and I suppose having it written down as a diagnosis, has made a huge difference to us as parents. We can use PDA strategies wihout self doubt, knowing we are doing the right thing. We can ignore those intent on pointing out that he's not autistic, we're just pandering to him. We can put things into place to help him to cope following a day at school, we can advocate for him confidently.

If we ever get to a point where another of our children needs to be assessed, I think we would bypass the NHS entirely if we could, because I don't personally know if I could cope with another year of interrogations and not being believed at all.

If it were needed, I would be booking my child to be assessed by Dr Jo and Dr Judy, knowing full well that if that child had autism they would be the ones to spot it.

As you can probably tell by everything that I've written, I would recommend them both in a heartbeat.

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