Wow. Frustrating is an understatement.
We had our ADOS (Autism diagnosis assessment) this morning. Actually, that's not 100% true. We had half of our ADOS. In order to gain a diagnosis, there has to be 2 people present to asses the child, one speech and language specialist and one psychologist or paediatrician. We were booked to see a Speech and language and a psychologist. However, the speech and language lady was blocked in by flooding and did not make our appointment. So the normal procedure was changed and this is what happened.
Firstly, Duck was seen by the psychologist, she spent 45 minutes going through the ADOS play assessment with Duck and then we left Duck playing on her tablet in the waiting room whilst my friend and I went to go through everything else with the psychologist.
We were told Duck co-operated well, but made no eye contact what so ever. She also made no hand gestures in what she was doing, nor did she give more than one word replies to everything she was asked, although she did remain polite throughout.
We went through her history, her previous assessments and I was asked questions that I had never been asked before. Questions that made me really think about Duck. I was asked so many questions that I cant list them. But one that stuck with me was this; 'Does Duck use hand gestures when describing things to you?' I had to think hard on that one. In all honesty, I can not recall one time where by she has used hand gestures when describing something. I think as far back as I can, I barely remember her pointing to things, she has never used gestures to describe a plane flying, nor when she is 'telling off' other children. In fact, I have never seen her use her hands as a form of speech in any way, shape or form. What's even worse, is I had never even considered it either.
The psychologist spent an hour and a half, interrogating myself and my friend over Duck. We were able to show clips of tantrums, photos of autistic traits and given plenty of opportunity to describe Ducks behaviours. It really helped having someone from outside the family there. She was able to give an unbiased view. What is more important is that both my friend and I felt listened to. The psychologist really understood the Jeckyl and Hyde of autism. She understood how Duck can mask things at school but explode at home. She explained its normal for autistic children to be violent to only 1 person most of the time. She explained its almost always mum. She understood my need to put extra locks on the doors and windows, she understood our need to find out what is really going on with Duck. She understood. All of it, she really understood.
I was not laughed at for raising Pathological Demand Avoidance (PDA). We agreed Duck fitted a lot of aspergers traits, but she did acknowledge she may also fit PDA. She admitted she did not know enough about PDA but she was aware it existed and she was aware that its real. She also said at the end of the day, an austim diagnosis is important, more so than where a child fits in the spectrum. Once diagnosed, the childs needs are met wherever they are. It doesn't matter what end of the scale or what needs the child has. They should be met without a specific label.
The end result of today was that the ADOS score sheet needed working out to see how she scored. This is key. If she doesn't score enough, she will not be diagnosed. Its frustrating to rely on such an old system. We also now have to wait for someone to visit Duck in school to observe her in her social groups. This wont be for about 2 weeks. (This feels like a really long time right now.)
The only good news from the meeting is that the lady who was there has agreed our description of Duck is typically ASD based. I got the feeling if it was down to her alone, we would have walked out with a diagnosis. But its not. Its up to a piece of paper and a second opinion. Once that is complete, they will sit and discuss everything and make a decision.
It could have been over today. We could have had a final verdict. But it wasn't meant to be. We are still waiting. Again.
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