Someone recently asked me if I had any thoughts or perspectives relating to having a dual diagnoses and being both autistic & ADHD.
It’s a slightly complex question. I’ve had a dual diagnoses for the best part of 20 years, but it’s only the last couple of years I’ve been re-exploring things like ADHD medication and discussing it on Twitter.
So with that in mind here’s a collection of my thoughts. Hopefully they are useful to other folks with a dual diagnoses or those who support us.
In the past I spent a lot of time and effort trying to separate out which things I did that where ‘autistic’ and which where ‘ADHD’.
I did this a lot as a teenager and it turned out too be rather unproductive. It caused a lot of distress and anxiety and didn’t prove very useful. Worse, trying to subdivide my life this way slowed down my ability to accept myself.
These days I tend to view stuff through the lens of barriers and impairments. I first identify the impairment I am experiencing, then identity the barrier, and then engineer a way to reduce the barrier.
For example, if my speech is impaired and the barrier is I can’t use the phone to call the bike shop, then I’ll try too engineer a work around like sending an email or asking someone to call them for me.
Having a big list of tools to use when engineering around barriers is far more important to me than mapping barriers to diagnoses.
While I don’t try and split out my behaviour into ‘autie things’ or ‘ADHD things’, I do approach them with two slightly different lenses.
At this stage I tend to take quite a medical view of the ADHD stuff. I would remove the ADHD stuff from my life in an instant if I could. However my perspective on this might change over time. That’s just where I am today. I wish it wasn’t part of my life but I accept that it is and do what I can to reduce the impact.
On the other hand, being autistic is part of my identity and something I am proud of. I don’t see being autistic as a ‘super power’ but I am a massive supporter of the idea that being autistic is ‘different not less.’
I also don’t extend these lenses to other people. Which lens people use for any diagnoses they have is such a personal thing. It’s contextual and subtle. It may also change over time. I know mine do.
This difference in lens means I also approach the autistic and ADHD parts of my life differently. While I don’t agonise over labelling things, I do treat them as separate concepts.
For the ADHD side of things I am exploring medical treatments using stimulant medication. ADHD meds have been part of my life on and off for over 20 years, occasionally against my wishes. They are a tool I find to be useful, thought in the bigger picture of my life they can sometimes be hard to deploy effectively.
For example, the latest meds don’t trigger a depressive crash which is a big improvement…. however they make my hands numb and seem to make my speech much harder. Side effects which somewhat limit their usefulness.
I really like my engineering focus on tools. Life is much easier with a wide range of tools to try when I encounter a barrier. Meds are just another tool.
Getting past the self attack and focusing on barriers has been hugely important to me. I am not a bad person or lazy. I just encounter more barriers than most people.. If meds help then so be it.
One of the barriers which I think is unique to ADHD folks and then interacts with being autistic in an unpredictable way is Rejection Sensitivity.
I find it very hard to be rejected. As a kid I made hundreds of attempts to play with other kids and they all failed. Over and over again. By mid primary school I gave up. I’d sit by the edge of the playground and stare down the path waiting for the teachers to return and for playtime to end.
Towards my later primary school years I started finding jobs to do. I ended up being a referee for the junior schools break time football match and I cleaned and put away tables in the hall. Something I also did in secondary school. Being useful was easier than dealing with constant rejection.
These days I tend not to experience rejection as much. I also have more self confidence and self worth so I doesn’t hurt as much when I am rejected.
Over the years I’ve also found that being my whole self gives me a bit of a boost.
Being my whole self can be quite full on for other people. For example a bouncy excited meeting with someone dressed as tigger can be quite the experience!
However people seem to respect me more when I am my whole self. I was terrible at masking and it just led to difficulty. As my whole self there my be challenges, but there an aspect of joy to life which people pick up on.
People have told me they came to a meeting with me expecting a rather grumpy accessibility specialist who’s going to tell them off. But have instead left the meeting feeling motivated and interested. Because I was able to tell them the stories behind the guidelines they broke. To make it interesting and relatable. That’s only something I can do if I am my whole self. Talking openly about the barriers which effect me and why.
All these things build into my last thought about a dual diagnoses. Building and maintaining a coherent identity.
Coherency is the concept of seeing myself as a single Jamie.
My impairments vary a great deal. On some days I have little to no speech and I float, bounce and stim around in a very stereotypically autistic way. At those times I need intense support to keep me safe.
At other time I may be stood on a stage presenting my research, or recording content for a podcast and folks describe me as eloquent and professional.
As the Jamie in the middle of these experiences I try to accept what happens and go with it. I’ve set my life up to accommodate either extreme and to not judge myself for whatever state I happen to be in.
This sense of coherency, to be able to says ‘all these different states are equal parts of me’ is really important.
I wonder if this is harder with a dual diagnoses when my needs are in conflict with each other. I find routines super effective, but I also crave new experiences and get bored quickly.
To make it work we have to build some sense of adventure into my weekly routine. I use some of my support time to have an adventure which is safe and sustainable. By doing so I keep those conflicting needs in balance. Recognising the conflict has been important. Even if it feels a bit discordant for one person to have totally opposing needs depending on the day.
A final note to end on. If you experience challenges which relate to ADHD things but you have an autism diagnoses I’d strongly recommend getting reassessed for ADHD. Being able to have a dual diagnoses is relatively new.
The meds can be helpful in an utterly life changing way and they are probably worth a try. The risks are very low but the payoff may be massive.
I hope it’s useful to share these thoughts and perspectives on a dual diagnoses. I am glad I’ve written them down as I expect they will change over time.
If you want to ask me anything about these things feel free to ping me on Twitter where I can be found at @spacedoutsmiles
Having a dual diagnoses isn’t always an easy path. But by embracing the right lenses and tools I’ve found the kind of adventure and success I never would have imagined for myself.