autism expert Hello Michelle Swan

Autism expert

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 “skillskilfulnessexpertnessprowessproficiencycompetenceknowledgecommandmasteryvirtuosityabilityaptitudefacilityknackcapabilitygiftdeftnessdexterityadroitnesscalibreprofessionalism”

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 prowessproficiencycompetence, knowledgecommandmasteryvirtuosity, abilityaptitudefacilityknack, 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.




15 thoughts on “Autism expert

  1. Reblogged this on …i am my own experience… and commented:
    Beautifully articulated and rationally presented. I consider myself still learning in relation to being an autism expert because I am only a year post-diagnosis, but if anything, I’m honing in my articulation skills and building my knowledge base off my experience and the experiences of others. ?

  2. Well, I do get the point, and it is valid, but we can call someone a cancer expert who has never had cancer and an OB can help a pregnant women, even if that OB is a man. So, I think someone could be an academic expert in autism and/or have work experience enough with autistic people to have some expertise but maybe we need a different term for those who are #actuallyautistic, like life expert. I appreciate your point and I hope you consider mine.

    1. Not sure who you mean by cancer expert? Do you mean a doctor who knows how to treat cancer? No one will assume that they know what it is like to have cancer though…. but in the case of autism people regularly rely on non-autistic people to tell them what the experience of autism is like.

      In the case of an OB, even if they haven’t had a baby, they have more experience than most mothers in delivering babies, so in that regard they are more of an expert, yes? I’d certainly consider an OB more qualified to a deliver a baby than I am, and I’ve had 6 kids! But no one is assuming a male B knows better than a pregnant woman what it is like to actually be pregnant.

      I didn’t say that a non-autistic person is incapable of helping an autistic person, and I did say that there is some level of knowledge existing in some people who know autistic people or read about autism. All I’m saying with this article is that I’d prefer the term autism expert to be reserved for those with both first hand knowledge and lived experience of being autistic. And that it would be good if parents of autistic people listened to autistic people over non-autistic people when seeking out information that will help them support their autistic child.

    2. The difference here is that the cancer expert is an expert in the diagnosis and treatment of cancer: we’re not suggesting they are an expert in the experience of having cancer.

      The OB is a better example here: the lack of lived experience if they have never been pregnant does limit how much they can empathize with their patient and fully understand what they are going through. I feel that non-autistic professionals are similarly limited by their lack of lived experience and can never fully understand what life is like as an autistic person.

  3. Would it be better if non-ASD people use the term ‘advocate’ instead of ‘expert’? I prefer this term when talking about my son. I don’t think anyone could reasonably say they are an expert in this area as there is so much diversity.

    1. I think using advocate could be tricky too. Many professionals who are called autism experts say that behaviour modification therapy is good for autistic people. However, there is growing scientific evidence and years of anecdotal evidence out of the autistic community that says this isn’t true. There are also “autism experts” who infiltrate autistic communitites then use the words of autistic people to create resources that the “expert” then makes monetary profit from without acknowledging the source of the information or compensating the autistic community for. So if we call these people advocates- a word that implies the person has the best interests of the group they advocate for in mind- we’d be speaking an untruth because what those people do is less advocating and more abusing and exploiting.

  4. When I talk to experts in my field of work, I regularly find that I can skip any explanatory detail (exposition) and get straight to the heart of the matter because we both have experience of what I’m talking about. We share common knowledge which allows us to allude to the underlying complexity with remarkably few words, but still understand each other completely.

    It’s the same when I talk to other autistic people. Most of our shared experiences are so similar that we rarely have to explain things. When we talk about situations we don’t have to go into detail about how we felt or reacted, and why, because we just know. Because we have experienced the same or something close.

    I have over 30 years experience in software development, the field in which I work; I have my whole life’s experience of being autistic. Even talking to experienced health professionals who have a good academic knowledge of autism is rather like talking to a programmer fresh out of college. It’s the difference between knowledge and understanding. They don’t grok it.

  5. I am a therapist with a special interest in autism and neurodiversity. I don’t call myself an expert though – most of my learning over the years has been via my clients, their partners and families.
    I am not autistic myself but believe that this can be helpful as I can “translate” to and from NT to enable my clients to be in the NT world more easily. I also believe every person to be unique and try not to make assumptions about an individual just because they identify as autistic (or have been diagnosed).

    1. I’m autistic and I work as a counsellor and mentor to autistic people. I also “translate”, as you say, help the autistic young people I mentor to understand non-autistic communication and culture better. Autistic people can do this for themselves. We don’t need non-autistic people to. There is a strong autistic community already existing, and it would be great if non-autistic therapist would help their autistic clients find it. Not that is is bad that you try to help, I’m just saying that being in autistic community is so affirming and empowering and we can do that translating ourselves for our community members who need it.

  6. Interesting post. Of course as autistic people we need our own community . No one knows what is happening inside your own head better than you do. And it is impossible to explain how you perceive the world to some one who cannot relate to your experiences at all, particularly when your way of experiencing things is classified as pathological ( i.e. the symptom of an abnormal mind) How can one explain to the world at large that the things one does are not meant to be annoying, manipulative, disruptive, aggressive or weird. They are just was of coping or simply just being in a world which does not understand – at all. What autistic people need more of is NT’s who are willing to listen, to accept ( even if they cannot understand), show compassion and to suspend judgement when confronted by those who are different.

  7. I just found this post in the reader (hence my super late reply so please forgive me. xD) I couldn’t agree more. Also when it comes to autism we are talking about people’s lives and a brains make up that is entirely different than the neuro-typical so to speak. So I think being an expert on a subject is a bit less extreme or what have you than being an expert on well my life and yours. Does that make sense? Like it is something that should be discussed or taken into consideration when talking about who is an autism expert. Like I agree that it’s great they want to help, support and encourage us etc, but when it comes to my life and my brain I am an expert on what is going to really help and support me. Studying math and the human brain are very different. 🙂

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