Hi there
A while back (beginning of September) I posted on Instagram about my diagnosis of Autism and ADHD. You asked me lots of brilliant questions and I then didn’t answer them… see my post about PDA for a bit more about why this often happens to me.
I thought I’d put them all in one place so it’s easy to refer back to, and add to as questions arise. I’m happy to answer any questions about my diagnosis, and how I notice Autism and ADHD having affected my working life. I will always caveat two things. Firstly, I’m not an expert in neurodivergence so these answers are based on my personal experience and also my reading/learning/speaking to other professionals/speaking to others in the autistic and ADHD communities. Secondly, I will only ever talk about myself and how my mind operates, and how this affects me and how I see the world. I don’t answer questions about my family or much of my personal life. This is for two reasons. Firstly, other people’s stories are not mine to tell. Secondly, I continue to practice as a therapist. My neurodivergent identity has become as significant to me as my more obvious identities - such as my racial identity, my gender - and I think it is important to discuss this openly as it is such a new area of exploration for many people (me included). But my therapeutic stance is to maintain clear boundaries between myself and my clients so that the emphasis always remains on their story, not mine. So, with that in mind…..
Q. What is Neurodivergence and Neurodiverse?
A. Neurodiverse is just all of us! We are all neurodiverse. It was a term coined by Judy Singer (read an article about her here), with the goal of moving the conversation about neurodivergence into something positive and less deficit-based. As in, we all have different brains and none are better or worse but bring different strengths and challenges.
Neurodivergent is an umbrella term which encompasses many different diagnostic terms like autism, ADHD, OCD, dyslexia, dyspraxia.
Ideally we’d live in a world where people’s different needs were accounted for so these differences were less challenging to people. However diagnosis and labels can help to understand ourselves and each other and, in the U.K. at least, are often needed to access support.
Q. How did you get Diagnosed? When? What made you look into Diagnosis? What was the process like for you?
A. I had what I now realise is quite a familiar path. “Sensitive” child, highly attuned to other people’s emotions, looking for patterns in behaviours and really invested in learning about human relationships. Perfect combination for a psychologist? Or a writer. Both of which I wanted to do - and I’m lucky enough to now do both!
Also, looking back, I had loads of sensory sensitivities that I had just worked around quite unconsciously. From never wearing socks (the cause of huge meltdowns as a child) to just somehow ending up spending most days working in very quiet, low stimulation spaces. But they were sort of things I worked around, and occasionally I would have a big energy crash but - until I started looking into neurodivergence - I didn’t really absorb the ‘crashes’ into my whole picture of myself. I just saw them as a bit of an inconvenience in our productivity focused world. I would never have thought about neurodivergence for myself despite having clinical psychology training - my experience was minimal, our training was (now I realise) woefully out of touch with the neurodivergent community, and as I had worked with perinatal clients for many years I hadn’t done a great deal of training in diagnosis in children. However, I really should (and wish I had) known more about neurodivergence in adults as our neurodivergence can significantly affect our pregnancy, birth and parenting experiences and needs, as well as our family environment.
Fast forward a few (many) years and as neurodivergence began to be talked about more openly, I started to wonder about it for myself too. The biggest turning points for me were….
Discussions on the Village group where some members with neurodivergent children would attribute certain behaviours to the possibility of neurodivergence in others’ children. It led to quite a debate, about whether we were pathologising children’s behaviour (aka ‘why do we need a label?’) This came - and continues to come - I think from our continued stigmatisation of neurodivergence. If we’re all ‘meant’ to just neatly conform to a norm, then we’re scared as parents when our child may not. I’ll be honest too and add that, because of my interest in attachment theory, I had previously attributed the rise in ADHD and autism to attachment difficulties (I do think attachment and developmental factors can have a role to play but I’m unpicking all of that still especially any suggestion of causality). I had a lot to learn! I still do. Then a few members pointed out that support is SO thin on the ground for neurodivergent children (and adults) and it can take SO long to get a diagnosis let alone any support (if it is available at all) that any hint of neurodivergence should be embraced, not rejected, as it can help understand ourselves and our children and figure out what we need. I think this helped me overcome my own (unconscious, internalised) ableism and look at neurodivergence with a more open mind and started to recognise more of myself
The growing conversations about neurodivergence - particularly the more ‘female’ presentations and learning about the neurodiversity affirming paradigm. Again, to be perfectly honest, the conversations in mainstream psychology spaces were… at best dismissive at worst thoroughly disparaging. But I found some sub-groups which were more open minded, found the work of others such as Devon Price, and Judy Eaton and this article in the Psychologist magazine. I also spoke to some colleagues who had received diagnoses themselves. This led to many hours of rabbit holes about neurodivergence - which I understand is a fairly clear sign of neurodivergence in itself as not apparently everyone gets joy from reading endless papers about autism. I have to thank Rebecca Schiller for getting me thinking about ADHD (and many other things), Maisie Hill for getting me thinking about autism (and many other things) and then a particular colleague who told me about hyper-empathy and autism. My reading on this basically described myself, so I started looking more seriously into autism too.
If you are looking into this for yourself, my two favourite websites are Additude Mag and Embrace Autism. Both have screening questionnaires too.
Particularly impactful were this paper about autism in females, Grace Timothy’s podcast Is It My ADHD? and Catherine Asta’s Late Discovered Club - both the community and her podcast. Autistic Parents UK have loads of useful webinars. Once I started looking at more content on social media, the Instagram algorithm sent me more and more so I also had lots of lovely lightbulb moments reading other people’s experiences, so often presented in the most creative and insightful ways. Particular accounts/people I have learned from are Ellie Middleton, Kirsti Hadley, the Mini ADHD Coach, The ADHD Couple, Neurowild… I also joined far too many communities to mention on Facebook and elsewhere. And the wonderful psychologist Dr Emma Offord who set up Divergent Life assessed me, answered my many many many questions and made it all a much less intimidating experience than it could have been. She has loads of useful information on Instagram
In terms of the when and how - I was diagnosed with ADHD in 2021 and officially autistic earlier this year (2023). Both were done privately after being told about the waiting lists locally. I was also supported in exploring these diagnoses by my personal therapist who I have worked with for some years now. My GP was supportive. These are both big big privileges.
I am aware that this is an INCREDIBLE privilege, to have done all of this privately. I also have a second privilege, which is that I know many psychologists and psychiatrists who have patiently answered what are probably hundreds of questions and sent me resources. And a third privilege is that, being a psychologist, I also knew how to access support. And I’m going to say a fourth privilege is that, having worked within systems and with different diagnoses, I know firsthand how impactful they can be which meant my main focus was on gaining understanding and not facing the confusion that many people face. Although there was a lot of that too.
I decided to be more open about my diagnoses mainly because other people’s stories were so important to me through this process. Big thank you to
and Sarah Crosby for encouraging me to share, as well as lovely friends, my supervisor and colleagues who helped me consider how to disclose my diagnoses and why I wanted to.I have questions that remain - one of which is the impact of the pandemic. Would I (and others) have looked into this had it not been for lockdowns? I know many autistic people who found lockdowns just incredibly enjoyable! Without the demands of modern life. Did that experience mean that masking became harder? How do those sort of experiences impact on developing brains? What does it mean when we are tiny and brought up with a sense that the world/other people outside our home are threatening?
Q. Did you always have a sense you might be ‘different’?
A. I think growing up mixed race in Newcastle upon Tyne with two parents who were not from the UK meant that I would always have felt different. I suspect that autism wasn’t picked up because there were so many complex reasons why I might sometimes do things differently. I also think my job meant that my special interest (human relationships!) was totally socially acceptable and reading about my special interest all the time was highly rewarded because people just thought I was a hard worker and would encourage me to work less. If I asked ‘uncomfortable’ questions people thought I was being too psychologist-y, not simply misreading a social cue. I also think I masked brilliantly, even from myself, which meant many of my differences were softened. My ‘unmasking’ process is involving embracing and learning more about what was under those masks - hence the blog. I feel really proud of that difference now.
Q. What do you think are the pros/cons of diagnosis? Was there a difference for you in suspecting and knowing?
As with anything, I am a big believer in understanding ourselves and each other as best we can - and diagnosis can help with that. It puts different things under an umbrella which can help make sense of experiences. I also hold diagnosis loosely, as it is also a social and cultural construct. Maybe autism will be called something else in a few years. I know if someone had called me AuDHD ten years ago I probably would have been critical of their need to define my identity so narrowly. Times change, and so do we. That perhaps is both a pro and a con - none of this is certain and there aren’t concrete solutions. Another con is that it is hard to get a diagnosis, there are long waiting lists, there is some pushback against the rise in awareness and many services do not hold a neurodiversity affirming approach. For me, the pros outweighed the cons and I was lucky enough to have a supportive person assessing me.
There was a difference though, for me, in knowing and seeing it in black and white. I needed to see the DSM diagnosis written on a piece of paper before I truly allowed myself to identify as autistic even though I suspected for some time before that and even had it pretty much confirmed multiple times before seeing my report! I have described it elsewhere as a coming home. The autism diagnosis answered a LOT of questions for me. One small example, I used to think everyone was mumbling when I was tired, now I know I have auditory processing differences I know it’s because at certain times I find it much harder to decipher speech and to separate it from background noise.
Q. I’m also a Clinical Psychologist and my training feels SO out of date! What can I read/watch?
I think our training was… to be quite honest, woeful. Now that I have read and heard so many autistic voices I am pretty embarrassed about how little I knew and how many stereotypes I held! My starting point would be to listen to neurodivergent voices. There are so many great books out there - I’ve mentioned some above. I also really liked Neurotribes. There are loads of brilliant podcasts too.
Q. As a NT parent to an autistic child, how can I advocate for them and help them self-advocate?
For me, there is something very powerful about the idea that neurodivergence itself does not lead to mental health problems, but the difficulties with being neurodivergent in a neurotypical world may.
The aim for me, and I think an aim for any parent of a neurodivergent child (or any child!) is to accept them as they are, help them understand and develop their strengths and help them work alongside the parts of them that are more challenging (or less ‘easy’ in a normative environment)
Particular helpful voices on this are Dr Naomi Fisher, Eliza Fricker, Heidi Mavir. We also have a wonderful and supportive Village community for ND people or those who parent ND children.
Q. Any thoughts on Instagram/TikTok ‘trends’ about neurodivergence? How can we negotiate being open about our neurodivergence without hearing ‘oh everyone’s ND these days!’ which is so minimising
A. I’m generally a fan of psychological/medical concepts being discussed on social media. There is a downside, particularly when nuance is lost, and therapy-speak becomes normalised but - to me - this is a powerful way of democratising psychology and helping people become better informed about the things that impact on them without having to wait to speak to a trained professional. There is still a place for trained professionals in helping people apply those concepts to themselves carefully, safely and in a caring way (hopefully).
The other part of this is that, as with many marginalised/outside of the norm experiences - actually so much of our learning and education on neurodivergence is coming from the neurodivergent community. Many of the papers I’ve read lately have been created by autistic researchers who are filling the gaps in the literature. There are still so many common experiences (such as autistic burnout) which are familiar within the autistic community that are still not widely considered by health care and mental health professionals.
Try fidgets and fries, African American autist and author on life as a Black woman with autistic kids, one who does not speak
Emma, I don’t know how you best take in new info- listen? Read? Something else? If listening is your jam, and if you haven’t yet, I highly suggest checking out a recent Tilt podcast about the dearth of understanding around autism (and neurodiversity in general) in the general mainstream AND in the professional world. I know it will both affirm what you already know, and also...
I too, was a neuro-lurker (online seeker of info, lived experiences, etc that were far more helpful than any DSM could ever be) for quite a while, trying to figure out things for my kids and then for myself. I’ll be following you and your resources here.
https://tiltparenting.com/2023/06/13/is-this-autism/