I have talked in previous posts about the journey to diagnosis with B. We had the meeting with the assessment team in the week of his 7th birthday. My Mum came with me to hear the outcome. I was really glad she did.
I explained in a previous post we had waited a long time for this meeting and really hoped that we were going to get some answers.
After talking us through a 20 or so page report we were finally presented with the conclusion that B displayed a range of behaviour and symptoms that was consistent with a diagnosis of ‘High functioning Autism’. Despite the fact that we had spent a long time with the suspicion that B had an autistic spectrum disorder and that we had asked for the referral and the assessment process in order to confirm our suspicions this news came as a shock to me. I had hoped, and even expected, that they would tell me that B had aspergers syndrome, but I had not expected them to use the word ‘autism’. I’m so pleased my Mum was with me as she was able to ask the questions that needed to be asked.
‘Why ‘High Functioning Autism’? What’s the difference between that and Asperger’s syndrome? It wouldn’t have occurred to me to ask such questions. The Psychiatrist and Psychologist explained that there were many theories and systems used by a range of people in diagnosing and classifying autistic spectrum disorders, but in reality there was very little difference between High Functioning Autism and Asperger’s Syndrome. So, we asked if there was little difference why had they chosen to use the term ‘High Functioning Autism’ rather than ‘Asperger’s'? They explained that they felt the difference was really about whether the child seemed to want to communicate with others, but in doing so struggled to make the right social choices about how to engage. On this basis their observations of B had revealed that he would quite happily have continued to play on his own and would have made no attempt to engage if he had not been prompted. So they had come to the conclusion of diagnosing High Functioning Autism rather than Asperger’s.
Following this explanation we were able to clarify their understanding of B by explaining that he does want to engage with people, mainly adults, and only when he has got to know them reasonably well and is in familiar surroundings. We did not feel that he simply didn’t want to engage with the world at all. We were lucky in the sense that the professionals we were dealing with were very open with us in discussing their reasoning, but I know that this discussion only arose because my Mum had enough knowledge, confidence and just about enough emotional detachment to ask these questions.
As well as discussing the reasons for the wording of the diagnosis by the professionals the discussion also focused on the issue of different connotations of the labels of ‘High Functioning Autism’ and ‘Asperger’s Syndrome’. My Mum felt that if B was labeled as having ‘High Functioning Autism’ many more negative assumptions would be made about his abilities and potential by schools, leisure providers and other professionals in the future, which may limit the expectations of others and hence his opportunities for development. I have to say, at this point I really wasn’t thinking of much at all, so I did leave most of the talking and discussion to my Mum. Thank Goodness she was there. After some discussion it was agreed by the Doctors that they would change the wording of the diagnosis to ‘Asperger’s syndrome’ rather than ‘High Functioning Autism’. They accepted there was very little difference and the differences were so blurred that it could be argued that B’s symptoms could be classed as either. They also quite willingly accepted the view my Mum presented in terms of the use of the language and the different views and judgements that would be likely to be made by the use of the word ‘autism’.
So it was that B was diagnosed with ‘Asperger’s Syndrome’.
Although I had consciously hoped that the end result of all the assessments would be a diagnosis of Asperger’s because I felt it would offer an explanation and that it would then lead to help and support for us and B to manage some of the challenges, I was not prepared for the way I actually felt.
On the way home on the bus it all suddenly hit me. It was real, written in black and white. I realised it would never go away. I had subconsciously been hoping that they would say there really was nothing and that B would eventually grow out of the difficulties, challenges and unique behaviour. I didn’t feel the relief I had expected to feel. That, in itself, caused feelings of confusion. I felt sad and upset. I felt like we had all been given a life sentence to something we didn’t understand and at that time, knew very little about.
On top of all those feelings I felt guilty and confused about feeling the way I did. I want to talk a bit about the guilt. I really struggled to relate the very real emotions I was feeling as a Mum with the values I believed in as a disabled person and had worked towards promoting for a large part of my adult life.
As a disabled person I believed (and still do) that all people have value and that we all have equal rights irrespective of impairment or health conditions etc. I believed in the concept of independence being about enabling a person to have choice and control rather than in the literal meaning of being able to do everything for themselves. I believed that people are disabled by the barriers and attitudes that exist within society rather than by the nature of their impairment or health condition. The kinds of attitudes I really disliked were those that pitied and patronised disabled people. As a disabled person I did not feel that my life was worth any less than anyone without an impairment and I believed that no matter what impairment someone had their life is not worth less.
So, why did I feel sad? B was still my Son, he wasn’t changed in any way, he wasn’t worth less just because he now had a new label. Why did I feel like my world had been turned upside down? I was still his Mum, I shouldn’t be feeling sorry for him or myself. Disabled people didn’t want pity. As a disabled person he deserved rights and respect not pity and sadness. At that time I did feel sad and because I felt sad I felt guilty.
The second element of my guilt was around the issue of the label. In the few days after the diagnosis meeting the implications of the discussion about High Functioning Autism vs. Asperger’s Syndrome began to play on my mind. Why did it mater what the label was? If I believed that disabled people all had rights then why was it important that we had a lable at all, never mind whether it was autism or aspergers? Why had I been shocked by the use of the term ‘autism’ in relation to my Son? I should be challenging professionals, teachers etc. not to make judgements based on labels, not colluding with them by argueing for my Son to have, firstly a label, and secondly a label that would seem more acceptable (aspergers) than another label (high functioning autism).
I found it really difficult to deal with these feelings, I wanted to talk about them, but I didn’t know who to talk to. D didn’t really understand why I should feel guilty. He was OK with the plain sad part, but very quickly moved on to the practical ‘well we’ve just got to get on with it and do the best we can’ attitude, which I also agreed with, but couldn’t move forward emotionally. I may have talked about it a little to my Mum and Dad, but I didn’t feel that they really quite understood how much the two emotions of sadness and guilt were clashing for me. My friends again were very supportive, and all of them could understand the ‘sad’, but the guilt about needing a label and what the label was and guilt about feeling sad were just alien concepts to most of them.
In the end I had to bury the emotions and try to deal with the practicalities. We had to deal with the diagnosis and try to find some support and information to help us manage the future for B and for our family. I also had a job that I was finding very challenging at the time with all sorts of conflicts of its own, so I couldn’t deal with all the extra emotion, so I put it away and moved on.
This brings me to the reason for writing all this down and sharing it. Hindsight is a wonderful thing and I look back now (4.5 years later) and know that there are things I should have done differently and things that I can share with others who may be in similar situations now experiencing the thoughts and feelings that I had.
I still believe that essentially people, usually parents, but sometimes adults looking for explanations, should not have to seek out a diagnosis and a label to be accepted and to legitimise their needs for support and recognition. In an ideal world we should accept people for who they are and for what they can achieve and should support people to meet challenges, to make choices and take control based on their needs for support and not on the label given to them. However, I know that on a practical level services do not work like that. Society and systems are set up in such a way that resources are rationed and a basic way of rationing is to look at the label.
On a personal level I have stopped feeling guilty that we colluded with this system to get the label for B in order to access services and offer an explanation or even a justification for the way we and B lived. I have come to accept that we only did what any loving parent would do, i.e. to do the best we could within the rules of the system, to support our Son.
I am now in a position to be able to write about my experience and hopefully to challenge some of the views of professionals about use of language and expectations. I am now quite open with people that B has Asperger’s, which is an autistic spectrum disorder. I will explain to people that Asperger’s is a form of autism and that autism is a spectrum disorder. I will challenge people who make comments about Asperger’s not being ‘as bad as’ Autism. I am able to do all these things now, which has helped me to stop feeling guilty, but it has taken a long time.
Society has a lot to answer for regarding the use of language, the judgements that are made and the way service rationing and allocation systems are set up. The last 4.5 years have been a huge challenge for me, but I now have a job that I love and passionately believe in and allows me to go some way towards beginning to challenge these attitudes, but I also believe that in challenging the way society and systems are set up we must be very careful not to make parents and disabled people feel guilty for having to do the best they can to make current flawed systems work.
Thank you all for reading.