There’s No Such Thing as an Autism Expert

When I wrote the headline for this piece, I was angry, exasperated, tired, cranky, triggered. So now I’ve let it breathe I can admit okay, I suppose technically there are autism experts out there. But anyone who likes to generalise about what autistic people are or do are not those people. 

The number of verging-on-retirement Caucasian cismale hetero paediatricians in Sydney lauded as being experts in this field, who dismiss anything short of school-aged non-verbal boys who stim all day and don’t make any eye contact, is appalling. These guys became experts when the understanding of neurodivergence barely scratched the surface of the reality of it. The majority appear to have not kept up as more information has become available. They’re largely sticklers for old-fashioned diagnoses, and dismissive of anything that doesn’t meet their early 1980s checklist.

In general, neurotypical people who speak as autism experts make me uncomfortable. Neurotypical professionals can speak in observational terms, can regurgitate what they’ve been told by neurodivergent people, and can read all the material out there… but can’t appreciate what it genuinely is to be neurodivergent. Just as I can’t really understand what it must feel like to be neurotypical. I simply assume that all the societal neurotypical expectations I struggle with are significantly easier to meet! While many neurotypical professionals in this field are fierce allies, brilliantly informed, and very well-intentioned, I personally don’t think you can be an true expert in something you cannot genuinely understand.

The fortunate thing about acknowledging all kinds of autistic people now means there are neuro-affirming autistic psych professionals out there. However the number of times I’ve come across a post by a neurodivergent person saying that “we” do something in particular, or that certain things are difficult for “us”, and thought, “Well that doesn’t apply to me,” is increasingly frequent.

Every neurodivergent experience is different. We are each a unique combination of additional skills and difficulties, a new blend of phenotypes that make us different to neurotypical people. Yes, there is a general consensus on many elements of our experience, but our experience is not homogenous.

I am certainly not an expert. I’m neurodivergent, I have a(t least one) neurodivergent child, I have a psychology degree, I’m a qualified teacher who has worked with kids with “additional needs”… however, while people like me can give you advice as to how to appreciate, understand, and process neurodivergent behaviours, I will never* tell you all neurodivergent people react in the same way to the same thing, or feel the same way about a single thing, or speak as though “we” are all the same. It would be like taking one person from each socioeconomic group of every culture in every country, and saying “As humans, we all feel the same way about money.”

Our own personal blend of neurodivergent herbs and spices (see The Shopping Trolley) colours our experience, as does our upbringing, our supports, our traumas, our own communities, and the world around us. Even two autistic people with a very similar presentation of behaviours, for example, may be experiencing things very different internally. Two autistic people with a similar personal experience may present differently if, for example, one masks and another does not. In my experience, people assume I’m not negatively impacted by my neurodivergence because I don’t stim or meltdown in public. Really, Autistic Girls Mask was the rule of the 80s and 90s.

If you want genuine, solid, empathetic neurodivergent support, I would strongly recommend the likes of Yellow Ladybugs, TARA, and health professionals who actively present themselves as being neurodivergent and neuroaffirming.

I would suggest you ask the following, regarding any apparent self-proclaimed Autism expert:

• Is this person neurodivergent, or live in a neurodivergent family?

• Do they speak generically about all people with a particular neurodivergence?

• Is their experience in the field purely academic?

• How old is their research, or the research they have based their expertise on?

• Do they acknowledge the full breadth of experiences within the neurodivergent community, including the frequent differences between males and females?

• Do they refer to curing or treating, or encourage the learning of neurotypical behaviours?

And once you have considered all these questions, then decide how much weight you want to give their opinions. I wouldn’t say to immediately discount anyone who is considered an expert in the field; simply to take it with a grain of salt, and remember that all neurodivergent people are different and deserve to be treated accordingly.

We are not cattle.

* Pull me up if I do! Send me a message if you ever see me doing this, and I’ll send you a thank you card.