Sunday, 19 June 2016

Processing words.

I apologise in advance as this is another me, me, me post, but it fits best in this blog as 1) it will help me to process this enormous lightbulb moment that I have had and 2) it may help some of you understand better the processing problems that our autistic loved ones may have. As I have found before, now I've had this Eureka moment when it comes to my own processing problems, I can't explain it from someone else's point of view.

I also apologise because, on previewing this, it is very long.

Last week, as I've mentioned before, I attended the second session of Cygnet training. I'll admit, I have gone into these sessions knowing that I have researched autism for years, and knowing that when it comes to my boys, I know them and their autism better than any expert, so I did not expect to learn much. I certainly did not go into it expecting to have a massive, earth shaking revelation about myself.

The session was about communication, and reasons why people on the spectrum have problems communicating with others (yeah, yeah, yeah, I've read it all before, I know loads about this - I know, arrogant much?).

Specifically, my revelation was about processing information. (Again, yeah, yeah, I've read widely, I really don't think you can teach me anything about this - what an idiot I am!).

I've read about people on the autistic spectrum needing time to process questions and information, but on some level I now realise that I didn't fully understand what it meant. I have never, ever realised that this applies to me. I've taken it into account when talking to PDA boy and his older brother, and it helps, but not once in everything I've read have I ever been able to apply it to myself, until last Wednesday.

I, and many others on the autistic spectrum, have a constant dialogue going on in my head, going over conversations I've had, conversations I will have, and conversations I will never have. Most of what I say has happened before in my head, so during real conversations it comes out instantly and fluently. It is rehearsed and, to a certain extent, scripted. I always assumed that everyone does this, and I'm probably right to a certain extent, but with autistic people it can be constant and exhausting, and the need to have these planned answers is important. Take small talk for example, pointless conversations, but something that NTs value. I can pass as a decent small talker because I will pay attention to the weather and current news because these are the things that will be chatted about, I can rehearse these things in my head and I'm ready for a passing "ooh, it's supposed to be summer" (It is indeed, it's June and it's bloody freezing!).

I've known for a long time that I do this conversation rehearsal, so this wasn't the lightbulb moment.

At the cygnet course, one of the course leaders was talking about processing times, I can't remember exactly what she said, but it was along the lines of "Don't forget, if your child gives you a different answer to the one you're expecting, they may not have had time to process the question". (Sorry, I know this doesn't sound like a great revealing moment, you'd expect something profound and deep!). I heard this, and at the time it didn't mean any more than an interesting observation of our childrens' thought processes.

After the course I drove home and went through the things that had been said, the things I had said (Oh god, had I said the wrong thing? Had I annoyed anyone?).

I arrived home and made myself a cup of tea and sat down quietly to recover from the stresses of being in a room with fifteen other people, and it suddenly hit me, like a non-lethal bolt of lightning.

If you give a different answer to the one expected, you may not have had time to process the question.

And the realisation hit me.

I do this.

How have I never known this about myself?

If I am having a conversation, and a question is asked that I'm not prepared for, my brain will search for a Best Fit answer. It may do the job and I get away with it. Or it doesn't quite fit and it looks like I'm either misunderstanding the question or it looks like I'm deliberately evading a tricky question. Or if someone makes a jokey or unexpected comment, I will stand and stare, my brain working hard to come up with something, anything, whilst I stand appearing gormless and humourless.

I believe this may explain some of the difficulties I had during PDA boy's assessments, and more recently with CAMHS.

One question that stands out was from our CAMHS therapist.

"What do you want us to do"

At the time, I was put on the spot, I vaguely knew the answer, but I couldn't find the words. I felt pressure to answer, time is limited, so, rather like a Google search, I put in the key words and my brain found the closest thing to an answer, but it was just useless spiel about PDA boy's difficulties one more time. CAMHS believe we are obstructive, and I think my, perhaps inappropriate, responses have unfortunately confirmed this. I did disclose my autism to the CAMHS therapist, but as I already know that their knowledge and understanding of autism is limited, I shouldn't be surprised that they didn't understand that this may be an issue for some of their patients' parents.

I did eventually think of an answer, but it was days too late.

Since first learning about autism and how it affects my boys, and later realising that I was recognising myself, and going through to my own assessment and diagnosis, this realisation that I do have problems with processing information has been the most mind blowing.

How on earth have I got to forty years old without realising that I need time, sometimes a lot of time, to process information?

How have I not realised that the answers I was so often giving didn't quite fit the question I was asked? It seems so glaringly obvious now.

I want to approach all the people involved in PDA boy's assessments and ask them to recall how I came across in all those difficult, time consuming appointments, but I won't because that's not their job, but it would be interesting to see if their recollections confirm what I have only just learnt about myself. I can remember giving rambling long answers to open ended questions, because I wasn't sure what they wanted to know, so I gave as much detail as possible to make sure I covered what they were answering. Again, I feel sure this was down to processing problems.

During PDA boy's private assessment (which I will talk about next week), the paediatrician we saw, Dr Jo Jones, was very good at asking questions. When I started to ramble, she would stop me saying "no, I don't need all that, I want to know abc", when I was launching into the whole alphabet. She would then explain exactly what she wanted to know, thus saving time and meaning that in the three hours we spent with her, we covered far more than we did within several hours of speaking to people for the NHS assessments. I suspect that she was experienced with parents who probably unknowingly have the same processing issues.

Knowing this about myself is huge.

I can see how I played a part in the failed support through CAMHS, and how the boy's assessments were far harder than they should have been, so my insistence that we were failed by the services supposed to help was not quite as I have perceived it. My own answers probably caused misunderstandings and assumptions about me and my agenda, because looking back I wonder if I did come across as fake, and my answers scripted. I have only ever been honest in these situations, and have been so upset that most people we have worked with have not believed me, but now I think I have the explanation.

My answers have always, always been truthful, but when they come across as rehearsed, it maybe sowed seeds of doubt.

So I intend to take this new information about myself and learn from it. If I'm asked a question, I will stop and think. I will try not to feel panicked into giving an answer as quickly as possible. If necessary I will write the question down and ask if I can give the answer when I've had time to think about it.

I will use this knowledge to be more understanding of my sons' processing difficulties. I will not get frustrated at them, but I will give them more time, and approach things in a way that is more straightforward and requires less complex processing.

I have learnt a big lesson as well. I went into those Cygnet sessions feeling that I knew it, and couldn't possibly learn, but I have. I hope I haven't come across as a smug know-it-all, but will approach these things with a far more open mind in future.

No comments:

Post a Comment