The Preparation

Right from the start things were very different with the second referral. I think the triage service had given some explanation as to what had happened at the first place and had instructed the second place to see me as soon as possible, and we were also much better prepared and aware of what I might need in order to get through an autism assessment without having a giant meltdown part way through.

There was still, certainly, a lot of tension involved. The second place to which I had been referred was in the midst of a reorganisation period – it had, officially, closed and was being reopened under a different name and we had no real idea of timescale as far as when I’d be seen once the reopening had occurred. We also still had the first referral open, and had they been able to find someone to assess me at the first place there was a chance I’d have to go back there anyway. And, of course, there was the whole build-up to go through again, the nagging doubts that I wouldn’t be diagnosed autistic, that I would come home feeling broken and suicidal once more, and that there still wouldn’t be any formal answers as to why my life had been going so badly wrong for so many years.

I went through Formageddon all over again, once more trying to answer everything as best I could and to explain why I’d answered the more ambiguous questions as I had. We were also sent another (different) list of questions to ask my mother, so there were a couple more sessions of phone interviewing and learning even more things about my early life and how I was when I was very small. Everything was, as before, written down, duly answered, copied, printed, scanned, and so on, and sent to the assessment people.

We started to feel a bit happier when good e-mail contact was established between the assessment people and my husband. They acknowledged receipt of the forms and a few other bits of information we’d sent to them, and the appointment for my assessment was made. The third attempt to get a formal autism diagnosis was, it seemed, going ahead.

My husband then received an absolutely superb e-mail that felt very reassuring. It described the building where the assessment would be held, the lighting, the furnishing, and outlined that once we arrived we could organise the layout of the room to be as comfortable as possible. It was made explicitly clear that I was welcome to take cushions, blankets, fidget toys and so on with me, and that we’d agree on a schedule of breaks throughout the assessment time, which was given as around three and a half hours. An outline of the format of the assessment was also sent, and parking at the venue was also mentioned. It felt very encouraging and we started to believe that these might be people who actually knew how to communicate with us, who understood that we needed clear information and practical help.

They also made it clear that we were welcome to send information in advance and that that would be helpful to them and would also mean that if there were things I was unable to explain in spoken words on the day they would already have the information so that wouldn’t be a problem. We’d sent around 60 pages of notes and information to the first centre although there was very little evidence that they’d really looked at it and I felt a bit jaded about the possibility of sending things that I was working hard to produce that might likely never be looked at. However, we determinedly made ourselves take a “clean slate” approach and I set about providing as much information as I possibly could, including sending the original files of some of the early posts on this blog.

Then came an even more reassuring document – a more detailed outline of what we were going to discuss on the day, along with explicit statement that there were no “right” or “wrong” answers. It was made very clear that the assessment was not going to be about “passing” or “failing” some sort of test and that the criteria on which I would be assessed were not some sort of “cut-off” on a quiz, but on a whole lot of different things regarding the way I communicated, interacted, behaved, and so on. This was not a “box-ticking-getting-a-score” thing, but an exercise in observing me and finding out how I thought and felt and communicated.

I set about going through the outline, answering everything as best I could, and saving it to yet another document in the growing “Autism” folder on my computer – another document full of evidence and thoughts, another 10 pages to add. By the time I arrived at the assessment itself, I had sent over 120 pages of 11-point Calibri for the assessors to read, some of which we’d printed and posted, and some of which we’d sent by e-mail, the last batch just days before the assessment itself. The feedback we’d been receiving by e-mail suggested that the assessor was actually reading it too, and I was absolutely desperate not to miss anything out, to tell the full story, to supply as much information as possible. After all, they’d said on the appointment letter that the more information I could supply, the better, so I took them at their word!

The final bit of pre-arrival preparation was an e-mail to tell me exactly who would be at the assessment (two people, one of whom would be asking the questions while the other mainly observed so I wouldn’t have to cope with talking to two people at once), and to inform us that a parking space had been booked and would be signposted and to give us a mobile phone number to contact if we got into any difficulties on the day.

I think we were about as prepared as it was possible to be!

Uncomfortable

Like a pendulum
Swinging wildly,
Undamped.
My mind has still
Not settled.

Where I fit
Into this new identity
Is still unclear.

I talk to people
And many of them
Expect answers,
Where I still have
Only questions.

Some days
There is despair
And a feeling
Of life being limited
Permanently.

Some days
There is hope
And a feeling
That life will improve
Substantially.

But where I fit
Into this new identity
Is still unclear.

I am suddenly forced
To confront issues
I had discarded
Years ago.

Things very very uncomfortable.
Offspring. Female identity.
Neither of which I possess.
Autism forces these things
Into my consciousness.

Not to mention
My own childhood,
A door I had long since closed
Forced open for diagnosis.

Can open.
Worms everywhere.
Wriggling around,
Demanding attention.

The past
Begging to be analysed

But where I fit
Into this new identity
Is still unclear.

There is no stable backdrop
To my life.
Everything wobbles.
Precariously.

And my mind
Is trying to alter its perceptions
Of who I am
But progress is slow,
Like an ocean liner
Doing a three-point turn.

As I try to plan
For a changed future
I desperately search
For familiarity
And stability.

Autism is exciting,
Enticing, shiny, new.
But this very newness
Makes it also feel
Alien and unfamiliar.

I have never fitted
Into a community
I am not used to being
“Part of things”
As soon as I become so,
I feel uncomfortable
And withdraw…

Where I fit
Into this new identity
Is still unclear.

My past needs
Reframing.

My future needs
Replanning.

There is uncertainty ahead
How functional will I be?
What can I try to do?
What do I want to do?

Preserve the old
Familiar interests
(accepting my limitations)?

Embrace the new
And shiny interests
(accepting intimidations)?

I ask myself
And many times
I search for answers,
Where I still have
Only questions.

Where I fit
Into this new identity
Is still unclear.

My mind has still
Not settled.
It swings wildly,
Like a pendulum,
Undamped…

Where I fit
Still
Unclear

Unknown

Uncertain

Uncomfortable