Monday, September 13, 2010

There's a gap...

I seriously need a drink...

Today I took Billy to a psychologist to have another ADOS done. He was diagnosed using the ADOS in 2008, and while it meant we had a piece of paper with Autistic Disorder on it (and therefore could apply for funding and support for schooling), that was it.

What was I expecting? Something useful. Something meaningful. Some information about autism, how it relates to my son and how we might best help him navigate his way through the next little bit of life. What we got was a cut and pasted report, with whole paragraphs verbatim from reports given to other kids. I don't know whether the test gives suggested text for parent reports or the practitioner has her own suggested text... but the report was not helpful. And BTW, do they really think parents don't compare reports? Trust me, we do.

So, given our decision to try to get Billy an aide at school, and the fact that his government funding runs out in November, we thought a new report would be... at least, more helpful.

The ADIR part of the process was useful. Mostly because the questions focussed on comparing how Billy was at 4-5 (first full dx) and now. I discovered quite a lot through the process, especially about the issues that have changed significantly (social understanding, social language, non-verbals) and the things that have stayed the same (sensory sensitivities, play preferences).

So, flash forward to the ADOS today.

First, allow me to set the scene. Billy has never met the psychologist before. Nor has he been to their clinic. It's a totally new experience. Billy is good with new experiences, so that in itself was not an issue.

What was an issue (the first issue), was the psychologist's choice to tell Billy (without consulting me) that Mummy was going to go away and have a cup of coffee and he could go into her (as yet unseen) office with her.

Excuse me? Are you kidding me? What child is comfortable being left in an unfamiliar space with an unfamiliar adult for an indeterminate length of time? Let alone an autistic child who is about to attempt a complex behavioural assessment. And while I'm on this point, what messed up kind of world are we living in that we expect that to happen?

Off my soapbox, I took Billy's hand, made it clear that I would be staying, and we moved into the office.

First thing I noticed was the open windows, letting in all the busy street noise - people talking, trucks trundling past, vacuum cleaners from the office next door blaring. The baby in the waiting room, bored with waiting (and perhaps the room) was making its feelings clear as day through the closed office door.

In that office was a second women. I still don't know who she is, as she didn't introduce herself. First thing she did, was let out an almighty cough. Billy's hands went straight to his ears and he started to cry. I explained that Billy had hyperacusis (though I'd be assuming that someone in the office during an assessment would have taken the time to read the freaking paperwork) and that coughing is not something that makes his life easier. She apologised.

Then, the psychologist started the assessment, using the strangest sing-songy, bad kindy teacher voice I've ever heard. Billy, in his overwhelmed state, raised one eyebrow, slumped in his chair and started yawning.

Then the mystery lady blew her nose.

Billy had one of two answers to every single question - 'Yes' or 'Everything'. That was it. He slid off his chair like liquid every five minutes. He looked around at me for reassurance every time the sing-songy psychologist hit top C. It was a freaking disaster.

Apart from some very cute pretend play with very odd superhero toys (what almost seven year old knows who Aquaman is??), he achieved nothing, completed none of the tasks, gave nothing resembling a correct answer.

And every ten seconds, mystery lady cleared her throat.

Thirty minutes into the session, I asked mystery lady to leave. She was miffed, but she complied. Billy perked up slightly, and started cracking jokes, but the damage was done.

The whole experience sucked.

Now, I get that kids have off days, and circumstances are rarely perfect, but seriously, this was a joke. There was no effort made at all, to set this situation up for Billy to succeed. The noise, the extra person, the stupid patronising tone... What were they thinking?

But, whether this clinic sucks, or the ADOS itself sucks (it is our second time, and I'm starting to think it does really suck) there's an issue here.

The issue is... what freaking use in the whole world is this process for anyone? What possible benefit (beyond a first time dx, and even then I wouldn't trust these people to accurately diagnose a decapitation) is there?

Will anything in this upcoming report say anything at all about what Billy can do or is capable of? The answer is no. And I know the answer is no because he showed nothing of what he is capable of, at all. Nothing. Not one thing. Beyond the hilarious making of a bed for Aquaman with a spiky hairbrush pillow and Wonder Woman's cape as a blanket.

It's a daunting prospect, but I'm quite happy to captain this autism ship. But I need some freaking help, people! I need experts. I need people who know more than me to get to know my child, understand the disorder he lives with and give us some advice about how to take him forward. I need an assessment tool that allows him, like his peers, to succeed rather than fail.

It's not rocket science that a kid on the spectrum will fail at or struggle with certain tasks. Not being able to 'show and tell a random stranger how to brush their teeth in an invisible bathroom'? No real news bulletin. My question is WTF is it in the test at all?

If we're going to do simplistic, no-brainer style tests, what about doing an autism screening that tests how many awesome voices my kid can do from TV, how many Thomas trains he can name, how many episodes of Garfield he can re-enact.

I know I'm sounding like an idiot, but there's some seriousness to what I'm saying. Really. I promise.

Here it is. Why are we working on a deficit framework? Why are we looking for 'can't do', why are we not exploring the autism can do? What is it about autism that means we ignore the abilities, and spend our time frantically trying to repair the inabilities?

Only last night, the Silent Partner and I were commenting on the fact that our (much contested by the ill informed) decision to allow Billy to learn through the things he loves has paid off in spades. Thomas the Tank Engine has taught him numbers, letters, colours, positive social language and a kick-arse English accent. David Attenborough has give him a love of drama, an understanding of big item issues like death and fear, and an encyclopaedic yet completely useful knowledge of animals.

I'm thinking, surely, we want to see what we believe a child's potential is... not just what their limitations are. I'm thinking, we (OK, I) want some help to shepherd Billy towards the most possible success. I think we need a screening tool that individualises autism, that acknowledges that life is a family-centric journey and that celebrates the fact that skills and interests are (at least possible) highways to a better future.

I'm not an expert, but today I met experts who are not experts either. And they are not the first. I don't blame the sing-songy psych or mystery lady for today's travesty, though they did a grand total of nothing to make it less of a cock-up. I do sense that both the test itself, and the lack of suitability of a lot of the  circumstances of testing (lack of relationship skills in the grown ups, distractible elements in the physical environment, complete disregard for the specific sensitivities of individuals on the spectrum) seems to be counter-productive... and soul destroying.

I totally accept that my son is autistic. What I do not accept is that he is a failure. And I do not appreciate either of us getting that message. He has come so far, and has qualities and abilities that most kids his age  would dream of, if six year olds were into that sort of thing.

Today sucked. And next will suck, when I have to go and get the report and sit through a (thankfully not sing songy, as she speaks perfectly normally to adults) recitation of it.

There has to be a better way. Because if there isn't, I'm going to end up drunk for the majority of the next two decades.

Speaking of which...


Fi said...

All I can say Val is OMG!
Are you serious!!!!
There was SO much wrong with all of that I hardly know where to start!!
Poor you, poor Billy,
No wonder you need a drink!

Susan said...

Thank goodness I'm not the only one who leaves those evaluations about to pull-out my hair (AND open a bottle of wine!). Hang in there sound like a great mom :)

Jaime said...

One one hand, autism is diagnosed by the lack of certain actions or abilities, so you do need to know what skills the child lacks. I do think there should be testing to find the strength though, and have the "experts" give parents that are new to all this some help in using the strengths to help the deficits

Christine said...

The ADOS has got to be the most subjective testing tool there is.
I have thought that since I watched Cuyler go through his 5 years ago.

I have never referred to anyone in the field as an expert. I am the expert. On Cuyler, anyways. I am his expert and know more about him and his skills and his deficits more than anyone else.
The others I call professionals. As for what I call the rest - I won't write it on your blog :-)

K- floortime lite mama said...

The psych clearly sucked !!!!
Maybe they were from that old generation that had all the crazy theories of refrigerator mother or those that classify autism as mental illness
What makes me sad is that there may be other Billy's and other R's out there who beleieve in what these people say
What will happen to those kids :-(
Without mum or dad on your side and beleiving in you .. oh I almost cannot bear to think about it

I adored your post so much though

Ro said...

That is so disappointing and a waste of your time, not to mention Govt funding.
Grrr, gotta wonder if they're just there for the hand-out (so to speak) instead of the children.

Missy said...

I had a completely opposite problem in our eval.
Everything in the room was "perfect."
There was no outside noise, there was only a one on one conversation, etc, etc.

There were not any circumstances where they could see his "bad" behaviors and see what I get to see at home. How can they truly evaluate a child in a clinical situation like that? I feel that evals should be done on site and over a period of time.

I am in the camp right now where we can't get services because he is not severe enough. There seems to be a no-win situation for any family who has a child with autism. When will we finally get to "win?"

Lisa said...

Very valid point, Missy.

Should the 'test' be set up for worst-case scenario, or best?

Billy got worst-case, and demonstrated his (dis)ability under those conditions. Missy's child got best-case, and demonstrated his/her ability under those conditions.

So, should all evaluations be performed twice? Do we need to think about *what* we are evaluating and *why*.

Are we evaluating a person's ability to function at their best? At their worst? At their most stressed? Under realistic conditions?

Cynical me. I look for the outcome I want from the evaluation, and plan accordingly. Why would I want my child (oops, sorry, Adult by definition of service providers) deemed to be able to work on the basis of a 30 minute interview, when I know full well that he couldn't keep it up for 8 hours a day?