Neurodiversity – am I 'bad enough' to join the club?

I heard someone this week who had gained a diagnosis of Autism Spectrum Disorder. They said they were relieved to now know who they were. He was able to join the ASD club. He also had the means and knowledge to gain this diagnosis. He also had met a set of criteria in order to gain it. But what if he wasn't all of those things? What if his symptoms and signs of Autism were not 'bad enough' to quite meet the criteria could he self-diagnose as somewhere on the spectrum and talk about his lived experiences to others? Would that be valid to join the club? Is that acceptable?

What gains membership to the neurodivergent or neurominority club?

This week I want to consider what happens when you are not 'bad enough' to gain a diagnosis/ a 'dys' or disorder. Do we miss the voices of those who don't fit neatly into our defined boxes and so often don't gain support, recognition or being heard.

Does this mean we keep ending up listening to people who only partly represent neurodivergent traits because they are the ones that can reach the microphone and the ones that agree with our beliefs? Does social media mean we tend to follow and listen to those we agree with? Confirmation bias is when we tend to ignore anything that contradicts our existing beliefs. It can also make us 'snarky' if/when people challenge our beliefs.

Several other things this week made me consider this in more detail.

I am reading Adam Grant’s book “Originals” and he quoted Sigmund Freud:

?“It is precisely the minor differences in people who are otherwise alike that form the basis of feelings of strangeness and hostility between them.”

Grant mentioned what happened when a deaf woman won the Miss America crown and when deaf activists said she wasn’t deaf enough as she spoke orally and didn’t use sign language in her acceptance speech. While we want to be with people ‘like us' at the same time we can be sniffy about who is allowed into this neurodivergent club and if they meet a set of criteria.

But what are these criteria in reality?

For example, how dyspraxic, dyslexic or autistic do you need to be to tell others this is me... Do you have to have a professional diagnosis to be allowed in the club or is self-diagnosis good enough?

What if ...you don’t fall into one distinct group i.e. you are not bad enough to gain a specific diagnosis because you have a number of neurodivergent traits across cognitive domains.

What if.... you have ADHD for example, but you don't know because everyone else seems to be quite like you too, but few have been diagnosed ( e.g. in justice settings where one-third of people have ADHD /DLD/Dyslexia but most won't have been formally diagnose d)

What if .....you are female and the way neurodivergent conditions and traits were seen in the past was misdirected to other conditions and you had ended up in the anxiety club or the eating disorders one. If you now gain the neurodivergent club is that OK? Can you be in several clubs all at once?

It's dimensional...

Lots of people have below-threshold cross-condition traits,i.e. having symptoms of one or more other conditions to some extent despite not having the diagnosis (Ronald et al., 2014 ).

I use the analogy of 'balls in the bucket' to demonstrate this concept. The balls are conceptually our different strengths and challenges. These can represent our overall cognitive diversity. You usually gain a diagnosis of you are 'bad enough' in one area e.g. for dyslexia it will be literacy-related such as reading, spelling, writing, comprehension difficulties. However, if you don't reach an arbitrary and variable diagnostic threshold you don't gain the diagnosis. Hence my framing of not bad enough. This dichotomous and often tick box approach results in some people getting services and others nothing at all, especially like me you have a mixed pattern of balls in your bucket.

It also means if you are just under the diagnostic threshold you may not have your voice heard or receive support.

Fact: Neurodivergent conditions often co-occur with other conditions

There is growing evidence developmental conditions are on a continuum. The Journal of Child Psychology and Psychiatry in August this year reported once again that Autism Spectrum Conditions :

“shows familial and genetic association not only with other neurodevelopmental disorders, but also with other psychiatric disorders, such as anxiety, depression, and intentional self-harm.”

Conditions like ADHD and ASD are increasingly seen as part of the same clustering. ADHD has been recognised as present in 30–80% of individuals with ASD, (van der Meer et al., 2012 ). 28–44% of adults diagnosed with ASD also meet the criteria for ADHD.

In one study of 385 children with Autism 61% had a co-occurring or other neurodevelopmental condition. Developmental Coordination Disorder ( also known as Dyspraxia) and ADHD also often overlap in about 45% of cases. I wrote about this in 2007 with Dr Salmon and Lisa Edwards!

Keeping our eyes, ears and hearts open

If we truly want to hear from the varying lived experiences of people who are neurodivergent across society we need to keep considering the ways to do so.

In groups where there are dominant voices, there can be a reason for staying quiet because if you have the courage to speak out you can be quickly attacked. I have seen this on Twitter on several occasions where people from one neurodivergent camp jump on someone because of a comment they have made. This can put off those who wish to join in the discussions. I have seen the attacks have a real and damaging impact on their well-being and sense of self.

Our sense of self and our identity is often derived from perceived membership in social groups.?It is based on three components. Categorization is the first process of putting people, including ourselves, into categories. ?The second is identification and is the process by which we associate ourselves with certain groups. In-groups are groups with which we identify, and out-groups are ones with which we don't identify. The third component is comparison and is the process by which we compare our groups with other groups, creating a favourable bias toward the group to which we belong. But also it seems to be creating an unfavourable one of those who don't quite fit our narrative.

But shutting people out of a group because they are not ‘enough’ stops us from considering also what we have in common. It makes us use language which is othering .. 'the neurotypicals' and 'the neurodivergents' as if these are distinct 'tribes' that cannot have anything in common.

"We have more in common than that which divides us". The late Jo Cox said in her maiden speech to parliament.

Clubs that are impenetrable stop those with quieter or more marginalised voices from being able to be heard. They are also often the ones who have been shut out of other systems too ( e.g. Children in Care; children excluded from school, those who are homeless, those in prison, and those who have avoided school for different reasons).

Let us be critical and challenge the voices that are echoing in the neurodiversity spaces and places and actively seek out others who find it harder to speak out. We need to avoid not become locked in distorted bubbles, resulting in polarization in our views and reducing our ability to consider that our knowledge and understanding can and will change over time.

I look back over the past 25 years and what I think now and then has changed considerably. We understand epigenetics far more and the interwoven effects of trauma and genetics on neurodivergent traits in a bidirectional manner. Amazingly we are only starting to really understand ADHD /ASD/DCD and females. Open but respectful discourse is good.

But while we are trying to make sense of the complexity can we also seek out what we have in common as well.

“If we have no peace, it is because we have forgotten that we belong to each other.”

―?Mother Teresa

What can we do to be really inclusive?

1. Stop being defensive and remind ourselves we know so little and we can all learn from each other.
2. Be our own devil's advocate and listen to others views even when they differ from ours
3. Ensure we listen to truly neurodiverse voices
4. Remain critical
5. Read outside our comfort zones

(Next week's blog ... when we are not quite 'good enough'....)

Professor Amanda Kirby is an oddball that doesn't quite fit into one category very well. She has a lot of different lived experiences of being a parent of a range of children with different talents and skills. She has worked in the health, educational, employment and justice sectors and in clinical, research and academic settings.

She is the?CEO of Do-IT Solutions , a 'tech for good company. Her opinions are all her own. She has developed Profiling tools to help maximize the neurodiverse talent and used them in a wide range of settings.

She published a book in 2021 on?Neurodiversity at Work ?with Theo Smith and is one of the 20 UK Voices on LinkedIn in 2020.