Nearly a year ago now, we made our first visit to the Social Communications Disorder team at Great Ormond Street Hospital (GOSH). Our paediatrician made a referral there for Sophie in February 2013 after we had asked for a more detailed diagnosis. We did this because we felt the term 'autism' doesn't describe her fully. We've always agreed with the diagnosis that Sophie is on the autistic spectrum, but as I've written about many times before, we do feel that she shows all of the signs of Pathological Demand Avoidance (PDA). So we hoped to get an opinion on PDA from some experts.
We had actually asked for a referral to the Elizabeth Newson Centre, where the experts in PDA reside, but as that is not in our county (it's located in Nottingham) the health practitioners were unable to refer us there (for cost reasons). They did however agree to send the referral to the National Centre for High Functioning Autism at Great Ormond Street, and luckily the team there, who work on complex cases, agreed to consider our girl.
Initially I was very pleased that we might get that detailed information we were looking for, and I was riding on the crest of a wave. About a week before our appointment I read more about the GOSH centre online and kind of fell off that wave as I realised they were unlikely to give us a PDA diagnosis. The clinic there now only diagnoses with the umbrella term 'Autistic Spectrum Disorder' (ASD) as per the DSM-5 medical regulations.
I still hoped that the reports might give us, and others, more of an insight into Sophie and her characteristics. I have still not come across another family with a young girl like ours - there are hundreds of parents on the PDA Facebook group who I am in contact with, but a large majority of those children seem to present more like a child with Asperger's would - that is to say, they have quite advanced language skills, and can generally manage to follow rules at school (although with difficulty, and it does cause them huge anxiety). Sophie displays the same avoidant behaviours at school as she does for us at home.
Last June the whole family including our eldest girl had an initial meeting at GOSH, in a small stuffy room, and we were all asked lots of questions about how life with Sophie had been. They tried to talk to Sophie directly, but she wouldn't respond to them at all; I knew this to be sheer anxiety from the unusual situation rather than petulance.
More than a few months later (actually seven months, due to staffing issues in the department), we returned for the in-depth testing. I've written about that day in great detail in Great Ormond Street Visit: suffice to say, it wasn't a huge success. Mr C and I were interviewed ourselves in a different room that day and our responses fed into a certain type of assessment.
Sophie wasn't keen on returning to the hospital a couple of months later, but we
We did make one more visit with her at the end of March this year, when the psychologists tried to complete some more of the original cognitive tests. Mr C and I remained in the room once more, but it wasn't a great day (again) and the doctors decided we should have the feedback based on the available test results.
So just before Easter we received our verbal feedback. As suspected, the team were not able to diagnose anything other than Autistic Spectrum Disorder, but they did agree that Sophie would fit under the 'banner' High Functioning Autism. They talked us through the scores for the tests she did complete, and touched on those she didn't, without really agreeing that the lack of completion was due to demand avoidance. They did admit that 'most' children they see are at least willing to try the tests, even if they are not able. Not so for our girl.
Today, almost a year after we were first at GOSH, and after some repeated chasing of the paperwork, we have received the final written reports. I would share with you what they say, but there are 26 pages in total. A lot of those words however, are our own words describing Sophie - so in short, they are telling us what we already know. The tests results are just numbers which wouldn't mean a lot to you, but I can say that her Perceptual Reasoning skills are within the superior range (she would score equal to or higher than 94 out of 100 children of the same age group), her Verbal Comprehension abilities are in the average range, her Working Memory is within average/low average range, her Processing Speed is low average, significantly slower than her cognitive ability, and she finds Executive Functioning very challenging.
The most telling sentence of the whole report however states 'it was not possible to calculate a FSIQ (full-scale IQ) for Sophie'. So where the above abilities lie in average-low average ranges, I think it's true to say that assumptions were made in these areas, because our girl avoided answering all the questions. We can't put a number on how intelligent she actually is, because she finds it too difficult to co-operate.
Does it really matter? Do I care how 'intelligent' Sophie is? Is it any 'better' for her to be high-functioning than if she had a learning disability? No. Just different. At the end of the day, she is not going to be like Stephen Hawkins or Bill Gates. She'll still just be Sophie. But receiving her education in the best possible way, suited to her needs, IS important to me, and right now I need help in figuring our what, how and where that is.
The reports from GOSH have given me new figures and phrases, but their suggested strategies to use for our girl are mostly those already being used or discussed by both us at home and by school.
So what now? None of this changes how she 'is' of course, and we knew it wouldn't, but I guess we were hoping for... something. What? Something more tangible, some direct help? Some views which would help reinforce our own and confirm that she needs a different way of learning? Maybe. We're not ungrateful for the reports, but we have reached the conclusion that our GOSH visits were a lot of effort for very little reward for Sophie.
I'll carry on looking for that unthinkable dream; some help in finding what is best for our youngest girl. I hope she can reach for the stars.
For more reading, here's all the posts detailing our referral and trips to Great Ormond Street in date order:
1. PDA Pathological Demand Avoidance
2. Birthdays Cakes and Great Ormond Street
3. PDA Pathological Demand Avoidance have you heard of it?
4. Great Ormond Street Visit: High Functioning Autism or PDA?