I saw an advertisement today that was promoting a talk by an autism expert, a man who has an autistic son. A few days ago I saw a link to the website of an autism expert who is a psychologist and researcher. Last week I saw a short video explaining autism made by an autism expert who teaches about autism at a University. The week before I saw series of infographics made by an autism expert who is an author and counsellor to autistic people.
Each time I saw these things, I wondered what it was about the people who are such experts on autism that actually made them experts. So today I’d like to discuss: who is an autism expert and why are they experts?
I’d like to start by thinking about what makes a person an expert on a subject- any subject- just generally speaking.
The definition of “expert” is “a person who is very knowledgeable about or skilful in a particular area“. An expert is considered to have “expertise“, which is defined as “skill, skilfulness, expertness, prowess, proficiency, competence; knowledge, command, mastery, virtuosity; ability, aptitude, facility, knack, capability, gift; deftness, dexterity, adroitness; calibre, professionalism”
So, I think we can say that, generally speaking, someone is an expert if they are either knowledgeable about something or good at something, and I think it’s fair to say that we’d prefer it if our experts were both knowledgable and good at what ever they are currently experting about, just because -you know- if they are experts we’d want them to be really really good and have an excellent understanding of the topic. Hopefully we agree on this and are all on the same page here. Yes? Excellent.
In the cases I mentioned above it seems that we might fulfil some of the requirements of an expert. But let’s look closely and decide.
The man who is father to an autistic son would certainly know a lot about his son and the things he likes and dislikes, his personal strengths and challenges. I would assume this man has also done some reading and listening to professionals who he has employed to help support his son. He would be relying on his son to tell him things about his experiences and he would watch his sons behaviour. So in that regard he knows about autism.
The psychologist and researcher would have an understanding of autism based on his observations of autistic people in his office and within the confines of self reporting and observation in research settings, and of autistic children’s parents reports of their behaviour. So he has a theoretical understanding based on his interpretation of what autistic people say and do in settings that aren’t necessarily true to everyday experiences of autistic people.
The university teacher likely bases his understanding of autism of text book information and research papers, journal articles and maybe talking to autistic people. His ideas about autism would likely be formed and conceptualised in similar ways to the psychologist.
The author and counsellor I imagine would have spent lots of time talking with autistic peoples families, and will have formed his understanding and ideas again in similar ways to the two other professionals mentioned. I dare say, because I’ve seen it happen, that this person also spends time in online spaces where parents of autistic people come for discussion that often involves complaining about how hard life is, and spaces in which autistic people rarely go because they do not feel safe to speak their experiences in communities where their words are routinely spoken over and devalued.
So, to my way of thinking, these people all satisfy the criteria of expert to some extent in that they have a reasonably wide base of theoretic knowledge about autism.
To be honest though, if I am seeking out an expert on a topic I want them to have more than a reasonably wide base of theoretic knowledge. I want them to have first hand knowledge, lived experience and skill in the area I want to learn about or need help with. There are a few reasons I want this extent of qualification in an expert. There are issues of safety, credibility and value for money… just to name a few.
Example: if I need a house to live in I want a builder who knows how to build a house that will be functional, strong, safe, long lasting, nice looking and good value. I want them to have successfully built houses before, bonus if they are living in a house they built themselves. I do not want them to arrive on day one of the build and pull out a how to book then refer to an online builders group and start typing in “… so, I’m new to this building thing. Can anyone tell me….”. No thanks. There is no skill there. No prowess, proficiency, competence, knowledge, command, mastery, virtuosity, ability, aptitude, facility, knack, or capability. I want more than theory and second hand knowledge. I want an expert builder. I think most people would agree with me that these things are important.
When it comes to autism experts I think we should expect the same. A theoretical, second hand information understanding of autism should not be enough for someone to claim they are an expert. Parents of autistic people and professionals whose work is to support autistic people could legitimately say they know a lot about autism and the autistic people they care for, yes. But, they have no lived experience, no skill at being autistic, no proficiency at navigating the world while autistic, no aptitude at managing sensory overload, no mastery of recovering from a meltdown, no prowess at creating workarounds to difficult situations that occur because of executive function challenges, no first hand knowledge of how it feels and what it is to be autistic.
They cannot credibly claim to be experts. Because they are not autistic.
Which is not their fault. I’m not saying they are to blame for their lack of understanding. I’m not saying they’ve done anything wrong by wanting to help. I’m saying they can’t be expected to understand and so they should not be seen as the ultimate experts.
That title, autism expert, should be held only by people who actually are experts: autistic people themselves.
Non- autistic people who want to help autistic people and their families would better help by making sure the voices of autistic people who share their experiences publicly are heard. They would better help by making sure parents of newly identified autistic kids are put in touch with autistic people and resources created by autistic people. They would better help by using those resources to inform their own practice as counsellors and supporters instead of continuing to theorise out loud about autistic experience from their neurotypical perspective. They would better help by letting the true experts hold that title and fill that role.