This is a follow-up from my previous post, “Discovering Autism”. It continues the discussion around how I gradually came to the realisation I might be autistic. Then it provides some more general information that might help others who are on a similar pathway.
I’ve talked about how I first discovered and learnt more about autism as a concept in general. But why did I think that I might be autistic in the first place? If there’s one big thing that triggered the whole process for me it’s my sensitivity to noises. This is what I initially went to the GP about and it’s definitely what gave me the impetus to start talking about autism-related issues to professionals. Moving to a noisier environment than I was used to, I became increasingly sensitive to the certain types of noises I was being exposed to (namely traffic), leading me to become stressed and even more sensitive in a vicious downward spiral. After doing some research online, I came across the concept of sensory sensitivities and sensory processing disorder. I learnt how common sound sensitivity is in autism, including some of the very sounds I find particularly bothersome. I also became more aware of other sensory issues besides auditory ones – sensitivities that I clearly have but had never really thought of as a thing. They just seemed normal to me and I’d assumed most people perceived things in a broadly similar way. After that, it didn’t take me long to come to the realisation that sensory issues are actually a core part of autism. Beforehand, I’d only really thought of autism as posing social communication difficulties. So when these two apparently disparate strands came together, I was quite amazed and convinced I must be onto something.
In terms of why autism spoke to me in the first place (before ever learning about the sensory side of things): I’d certainly experienced difficulties around social aspects, although I’d never quite known exactly what the issues were or how to explain them to myself, let alone others. In short, it was seemingly very easy for others (and myself) to chalk up my behaviour and experiences to introversion and shyness. Whilst both of these ring true, there clearly was and is so much more going on – things that learning about autism brought to light in a very exciting, slightly scary and extremely validating way. It explained my difficulties making friends and holding down jobs, my passionate interests and hyper-focusing tendencies, my dislike of change, love of routine and strong need for plenty of downtime.
You might be wondering how I felt at this point. That’s quite a hard question to answer… It deals with emotions which, like lots of autistic people, I find hard to untangle and identify for myself, let alone start to articulate to other people (although writing things down is a definite help). I will do a dedicated post later on in this series about making sense of emotions post-diagnosis. As for how I felt after discovering I was probably autistic, but before getting a diagnosis or even starting down the official pathway… I felt mainly very excited and grateful at having found a potential explanation. Very intrigued to learn more about autism. Validated and comforted to realise there were lots of other out there like me. At the same time I had quite a lot of apprehension, uncertainty and doubt about the whole thing and where it might lead.
If you’re interested, you can learn more about the backstory leading up to my own autism discovery/diagnosis over on the About page.
If you’ve recently (or not so recently) come across the concept of autism, think it might apply to you and are in the process of learning more about your (potentially) autistic self, here are a few guidelines that may help with navigating all the information out there.
Above all, I’d say don’t just look at the diagnostic criteria. It’s written to cover the entire autism spectrum and focuses on the most stereotypical behaviour. It’s arguably biased towards children and males. (Plus the language used will make you feel there’s something seriously wrong with you!). It’s really important to complement “official” knowledge with articles, blog posts and videos, especially content created by autistic people themselves, content that provides plenty of anecdotal evidence and insight that will likely give you a better feel for what it actually means to be autistic.
Steps to discovering an autistic self:
– Bearing the above point in mind, do have a look at the DSM/ICD criteria. Just don’t stop there. You might also want to consider researching some of the screening and diagnostic tools out there. There are quite a few, though not all of them will be relevant. A popular one is the Autism Quotient (AQ), especially in the UK where it’s used quite widely as a screening tool in the NHS.
– Read and research as much as you can. There are books, blogs and research studies galore on autism. A good mix of academic/professional information and personal accounts is best. You can check out my Links page (currently under development) for a comprehensive list of places where you might want to start.
– Adults should bear in mind that a lot of the information out there is written with autistic children in mind. Autism, of course, is not solely a childhood issue. It can, does (and must) change and present itself differently as autistic people develop. Try to think back to your childhood to see whether you might meet the criteria for the early signs of autism, but bear in mind that various traits can appear, disappear and evolve throughout a lifetime.
– Women should bear in mind that the diagnostic tools along with a lot of received wisdom on autism is based on a profile that was mainly developed with males in mind. If you were to remain narrowly focused on a list of stereotypical male traits, you might well miss your own female autism.
– Once you feel you’ve got a good understanding of what autism is and the many diverse ways it can present itself, try to gather your thoughts and focus in on yourself. I’d suggest using your knowledge to make a list of all the major reasons you think you might be on the spectrum. Perhaps share this with someone you trust so they can feedback and hopefully help you figure out if you’re heading in the right direction. It’s particularly helpful if you can talk to your parents or someone who knew you as a young child. Many professionals require (or at least prefer) to have first-hand early developmental evidence as part of the assessment process.
– If at any point you have nagging questions or concerns, or you just feel like exchanging experiences, seeking out autistic adults is a great idea. The online autism community is a large, active and well-connected one, and there are plenty of people out there willing to offer support and advice for those considering or undergoing diagnosis.
I did all of the above quite obsessively for about 4 months or so in the lead up to my diagnostic assessment. I accumulated quite a substantial amount of notes detailing autistic traits in all their diversity, along with my own interpretations and experiences of these where they applied. I ended up showing a lot of this information to the professional who diagnosed me and he seemed to find it pretty helpful. But I’m skipping ahead! It took me about a year to go from first seeing my GP to having my autistic identity confirmed, a story that’s the subject of the next post.