Late Diagnosis Anyone?

My neurology was confirmed in 2017

As I left the diagnostic centre, my first feeling was that it totally made absolutely everything in my life that had happened up to that point (and that was a lot of 'happenings') make sense. I suddenly understood why I'd never fitted in, why I disliked and avoided both other people and 'social' events, why I had life-interfering issues with food, with injustice, with matters of the senses etc.

Even just writing this down feels a bit 'lame'. To explain - once I'd started doing my reading post-diagnosis, every single post-diagnosis person I read about stated the same thing, that this eventual (and sometimes long-awaited) confirmation of their neurology made everything up to that point, make sense. Suddenly they understood why things had turned out a certain way or why they'd reacted to something from the past in a certain way, or why they'd struggled with x, y or z.

I use the terms 'confirmation' and diagnosis' interchangeably here. For me, the word 'diagnosis' is more akin to a medical condition which autism and ADHD are clearly not. However, when I did have my neurology confirmed, the word 'diagnosis' was in common use and as this group has been set up for older adults, many of us will be used to the 'diagnosis' teminology. Whatever feels right for the individual is the right term to use but I have used both here so that for those that do prefer 'diagnosis', we stay on track with what is meant.

Although it seems that these feelings are exceptionally common for people, it still doesn't mean that they are any less important for you - the individual, and there could be years of mulling over the past in your mind and wondering "what if" you'd done something differently or somebody in your life had been more accommodating over a certain issue. It's useless telling us not to ruminate on the past as it's something that many of us do naturally but the important thing is, how we live our lives going forward. Now we have our neurology confirmed, we shouldn't have to put up with second best or feel like we can't say what's on our mind so it's actually a great time to carve out our best outcomes :-)

In the non-neurodivergent world, opinions of autism and ADHD, in fact, any type of neurodiversity, tend to be influenced by the often stereotypical portrayals of us in the media. This is not only unhelpful to neurotypical people wishing to gain more knowledge of different conditions but it is also detrimental to us as there is no need for us to be categorised. 

Following my confirmation, like many - I read a lot. And I mean - a lot. However, I also undertook a number of courses related to autism and asperger syndrome (the latter of which is no longer recognised as a diagnosis). I started a successful support group for families with children affected by autism and visisted local schools to deliver information on and insights into autism in age-appropriate language for children in primary education. I have also continued my professional development by attending further courses covering; Supporting Autistic Teenagers and Young Adults, Understanding Sensory Processing, Pathological Demand Avoidance and Autism and Mental Health. I am a fully qualified Mental Health First Aider for Mental Health England and outside of neurodiversity fields, I am a contract law specialist, a writer, musician, artist, creator, neurodiversity advocate and radio enthusiast.

I am always happy to assist in raising awareness from both an information perspective and also from my own experiences of being autistic so if this is something that you would find helpful then please do contact me.

Having written all of the above, it would be easy for people to assume that I'm 'sorted', 'OK', got everything 'together'. This is a common misconception that people without the correct knowledge can make. In writing all of the above, would you guess that I struggle severely interacting with other people, that my anxiety levels are often off the scale daily, that my mind is in permanent flux, that I experience autistic meltdowns and that the massive 'hard-knocks' that life has thrown at me have left me with only tiny fragments of self belief? Probably not. 

But that's nobody's fault becuse people don't know. They don't understand. It's easy to ascertain from the internet, that many people confirmed as autistic / ADHD (whether later in life like me, or earlier on), then set out to 'make a difference' to do something that raises awareness and I believe the only true way that positive differences can be made is by not only raising awareness and educating non autistic people but in trying to foster a society where all difference is seen as 'the norm', no matter what condition it relates to. I believe that we need to go beyond raising awareness and raise acceptance levels of disability in general in society.

I firmly believe that segregation is not an answer to anything. Everyone is neurodiverse but only some of us are neurodivergent. There is a difference and I'm sure many of us would prefer to just get on with our lives alongside everyone else, in the knowledge that everyone else is accepting and tolerant of behaviours that are different to their own. We certainly have a long way to go before we reach that stage but what happens in the meantime? For all the time that any neurodivergent person (regardless of what that diversity is) is called out in the street, victimised, stigmatised, cyber-bullied, passed over for promotion at work, subjected to abusive behaviour by others, we need something to bridge that gap. A safe space where we can connect with other likeminded, neurodivergent individuals without the fear and anxiety that can often accompany trying to interact with non neurodivergent people.

Just a simple social media search will show that there are a number of groups around that are in some way involved in supporting those affected by autism / ADHD. Many relate to parents of children, some relate to teenagers or younger adults, some say they are for everyone although it becomes obvious from the membership that it is geared towards younger people. Whilst every single one of these groups are valid and much needed, it seems that little or none of these groups are established specifically for older neurodivergent adults (35+) and any that are are specific to an area.  When I first started this group in 2022, the North West of England didn't have such a group. Now, it has one that I'm aware of in one specific area.  I'm hoping that by becoming a collective, this can change but I'm just one person. I started this group with no money and no contacts so it really is the epitome of 'starting from nothing'.  Hopefully - it can become something.