I just had a friend over for afternoon tea, cat cuddles and conversation. My friend is an educator and she has also some young people on the spectrum in her family. She asked me what I thought of how the Autism ‘label’ should be applied and what the pros and cons of getting a diagnosis were. I thought this was a very interesting topic and worth investigating via the means of blogging. This will be more of an exploration than an exhortation as I’m not sure if I have any answers, just some thoughts.
The first thing to be aware of with the Autism diagnostic label is to understand what it is being used for. Any kind of diagnosis has a few purposes. In my mind, these are some of the functions of the Autism label:
- To access assistance at school, at work, in the community etc (funding for programs specifically set aside for people with an Autism diagnosis)
- Identity. The label can be used to identify as Autistic and join other Autistics in a peer or friendship group and to better understand and accept yourself
- For schools to understand and place Autistic students with learning support etc
- To understand more about yourself, your child or your partner who may be on the spectrum.
The diagnostic label in and of itself is not really ‘good’ or ‘bad’. In some cases it can result in great, positive changes for people. They might understand themselves and their place in the world better. They may be able to access support they couldn’t before getting the diagnosis. The diagnosis may enable family, friends and colleagues of Autistic people to understand them better and not be blaming about ‘weird’ behaviour but instead be accepting and respectful. The label may encourage people to connect with their Autistic peers and become an advocate or just have loads more friends than they would ever have imagined.
Sometimes though, an Autism diagnosis can result in some more negative outcomes. People diagnosed very young can be shielded from every difficulty due to parental anxiety and end up lacking independence and resilience as adults. They may be given negative messaging and low expectations and told how they won’t ever do anything meaningful with their life and this can sadly become a self-fulfilling prophecy. A diagnosis can feel like a burden to an individual, confirming their fears that they are ‘different’ and will struggle in life. Instead of valuing and respecting themselves, the opposite can occur and people might feel more alienated. Employment and promotional opportunities may be denied a person who discloses an Autism label.
For me I didn’t get the diagnosis until I was 20. I had endured thirteen years of misery at school, longing to be like other kids but not knowing how. By the time I got my diagnosis I was so negatively focussed and filled with self-hate that I was in prison. The diagnosis was meaningless to me. It seemed like a diagnosis of ‘geek’, which was something I had been trying to escape since I was a young teenager. It took me six years to accept my Autism diagnosis and when I did, my life improved. I understood that I was not a poor lonely little person unlike the rest of the human race and that in fact there were many, many other people a bit like me. I spoke at a conference about women and girls on the spectrum a couple of years after accepting my diagnosis and I felt so included and alike with the other women I met on the spectrum. Now I disclose my Autism to pretty much everyone. Unlike in the past, it is not something I am ashamed of – far from it! If anything I am incredibly proud to be an Autistic woman, an advocate and friend to many other Autistic women and men.
One thing which I will note the the idea of context around diagnosis. I have a new book due out very soon and my coauthors and I saw fit to include the criteria for Autism in the main diagnostic manuals used by diagnosing clinicians – the DSM V- 5 and ICD – 10. I was struck by how fiercely focussed they were on deficits around Autism and what we struggle with. At first I was quite angry about this but then I rememberred what both those diagnostic manuals are aimed at. The diagnoses within the DSM and ICD are all about allocating medical insurance and healthcare funding. They probably need to be deficits-based in order to perform that role. They are not written for people on the spectrum or their parents. They are written for doctors to allocate health and disability resources. Unfortunately I think a lot of parents of newly-diagnosed Autistic children see these sorts of diagnostic criteria and and in turn feel quite dismal about their child’s future. The DSM and ICD should probably come with some dot points advising clinicians how to speak to Autistic people and parents which builds their confidence!
The other thing which is quite a recent thing around diagnostic labels is the labels themselves. The ICD – 10 still includes Asperger’s syndrome as an available diagnosis but the DSM – 5 – the more commonly used manual with doctors in Australia and some other countries – has changed the Asperger’s diagnosis into a subcategory of Autism Spectrum Condition called ‘Autism Spectrum Disorder Level 1’ (or something similar). When this change to the DSM was mooted, a lot of people got quite bothered about heir Asperger’s diagnosis and whether they would need to change it. A few years on and I notice that many people who were diagnosed with Asperger syndrome now use ‘Autistic’ to describe themselves. I always say ‘Autistic’ when describing myself. For me, the reason is that some people ascribe unhelpful functioning labels to Autistic people and I don’t really find those a useful description of anything. I mean, people can be ‘high functioning’ at one point in their life and ‘low functioning’ at another so it is a little bit pointless not to mention that it sometimes dooms people to a life of negative messaging and low expectations. I prefer to be included with all the Autistic people rather than a subset. I know some people disagree but that is just my approach.
I think the relative merits of diagnostic labelling can vary a lot according to the individual and the environment they are in and also the purpose the diagnosis is being sought and / or used for. I do tend to encourage parents get a diagnosis for a child, particularly if the child is struggling but in some cases I see children who evidently have a lot of Autistic traits but are doing very well in life and I wonder if maybe the diagnosis can either wait for later or possibly not at all. For Autistic adults, getting the diagnosis can be life-changing and many adults I know were so relieved and happy to finally find out that there is a word describing their sort of experience and that there are millions of other people who share that word.
A complex topic and certainly worth some consideration. I don’t think I solved any conundrums (or indeed if they can be solved at all) but I enjoyed unpacking some of the implications of Autism label.