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Who Do You Think You Are?


Expert, Connoisseur, Informed or Aware?


We use the word “expert” quite freely yet don t often explore what it is we actually mean. I argue that regarding Autism, there are a range of different levels of “expert” based on your lived experiences.

I argue that we can be Experts, Connoisseurs, Informed or Aware.


I will try and break these down.


Let’s start with “Aware”


Aware people are those who know that Autism exists. They may even have worked with Autistic people or know some. They are generally not Autistic themselves or identify as such. Levels of awareness may vary and can be shaped by misconceptions, bias as well as a genuine desire to do no harm – but invariably, unless they are motivated to move to the next stage, it is likely they will. Who may fit into this category/ Well anyone potentially. It may be extended (or immediate) family, or work colleagues. It could be acquaintances, professionals, your next-door neighbour.


The Informed


Informed folk are those I like to think of who have taken time to attend some training or read a book about Autism and sit with an understanding of Autism beyond the pre-conceived ideas. Think of the professional who had an Autism awareness training session and is now expected to be viewed as competent in working with us. Or perhaps a neurotypical parent who thinks they know what their child experiences on a daily basis based on their own views and understanding. They may be proactive in championing Autism in their community or improve lives of their Autistic loved ones or clients. They can still do harm.


I can feel some of you starting to bristle at this point. Please bear with me, overcome your uncomfortableness, and keep with me so you can understand what I am trying to explain.


The Connoisseur

These people are the active seekers of understanding and ways to increase knowledge or understanding of others. The definition a “connoisseur" is "a person with special knowledge or appreciation of a field, [esp. in the arts]” (Cambridge English Dictionary). They have chosen to unpick and explore a particular area or aspect, and this could be Autism in general or aspects of Autism that interests them. For example, researchers, academics, advocates etc. The motivation to understand on a deeper level may be for many different reasons but they are generally revered more than people who are informed. They are usually referred to, by those looking from the outwards in, as the “experts”


 

So, who are the “experts”?


There is only one person expert in the lived experience of Autism and that is an Autistic person. They are the sole expert in the everyday, of how Autism shapes their lives. No-one else. Not family, including parents, not professionals, just them.



Autistic people understand the lived experience of other Autistic people, but they are not experts in other Autistic people' individual lives. However, they are the closest thing in this respect. We have shared experiences of being but on the whole, the individual maintains expert position of their own reality.


However, there are other experts. It depends on context and that is why it is never simple to just say “the experts”. You need to say what these people are experts in. Context, as with everything with Autism, means everything.



If you want to understand the experiencing of parenting someone who is Autistic, then parents become your expert. Not in Autism you understand, but parenting. There is a difference. That role is meaningful, valid, and important to understand but is not the voice of the Autistic child or adult. I love my mum and am in awe of her as my parent, but she is not an expert in me, as me. Ask her to describe her experiences of Autism and she will, eloquently, through her lens as a neurotypical third party. As a person impacted on, with some understanding of, but not ‘being’ Autistic.


Now, imagine if that parent is Autistic themselves. What a game changer! Two lenses to look through and a more complex understanding of the lived experience as both self and in a parent role. And yet for so long we have been overlooked – in research, as “expert”, as valued. I am tentatively pleased to say, the vista looks like it is changing slowly with newer research seeking out the narratives and experiences of Autistic parents (so far only mothers), so I have hope (see some examples below).


But I am also aware this is a slow road to full acceptance and inclusion. Practice often takes longer to catch up with research and the dominant discourses still prevail around competence (lack of), empathy (lack of) and other favourite insults.


 

Now what about professionals?

Well, when I say that word, what is the first thing you think of? Older white woman by any chance (man if position of power)? Neurotypical? Did it ever cross your mind that professionals may actually be Autistic? What does that say about your bias (see my previous blog).


Professionals are expert in their role. That needs to be acknowledged. They have trained, often for several years and they have reached that point where they can say, they know a lot about their profession. I don’t know more than a doctor, and they don’t know more about social work than me. Mutual respect of professional expertise in that respect I rarely question. I may not agree with them, but I respect their role.


Researchers will know all about what research entails, what data looks like and different ways to analyse this. They are trained to do this. They are experts in carrying out research. But they may not be aware of or open to their own biases. They may have a skewed view of Autism based on other likeminded research. They may not be as curious or reflexive as research needs to be, But that’s a whole other conversation


Phrases are often bandied about like “so-called professionals” by parents and Autistic people who haven’t felt supported or listened to or understood. They are professionals, they will know their job inside out (most of them) but know diddly squat about Autism or what you need in terms of support. Remember, they are likely to be aware of informed. They are not experts in that respect.


Unless (are you catching on?) they are Autistic! I am Autistic and I am a parent. And I am a professional. I worked damn hard to get to a place where I am secure and confident in all three identities. I overcame boundaries in education, in acceptance, in poverty that made it especially hard to obtain a degree and professional registration. I earned my right to be recognised for my achievements. I am proud to be a professional. I am proud to be a social worker. I am especially proud to be an Autistic social worker. Don’t diminish or denigrate my success, my strengths, my abilities, my struggles because other people have disappointed you. We, as Autistic people hate being homogenised as one generalised group, don’t do that to other groups We are not all the same.


 

Great I hear you say, I’m beginning to see the pattern. I’m understanding the importance of role and position in the Autistic system. Uhuh? Good but what about race? What about other disabilities? What about gender? What about sexual identity? All these are relevant, informing of our lived experiences and may offer some connection between us and the professional, the parent, the Autistic individual that is beneficial. But it also means I cannot identify with all your intersected identities. I cannot say I understand the expertise of someone with a different ethnicity who is Autistic. Or a different gender identity. And that’s OK. Because that’s where listening, respecting, learning comes in. Cultural humility. Hearing the voice of that person, understanding where they are coming from, what it means to them (whatever “it” is), what they are telling you. Get ready to work hard.


An aware person is more likely to move towards an informed position if they get opportunity to challenge their own ideas or understanding. And that won’t happen in attack mode. Likewise, the connoisseur is more likely to enter the shared Autistic space if they are challenged by funded, promoted, valued Autistic -led research (there are some great NT and ND collaborations out there). The “expertise” needs to be led by Autistic voices and action. And there is momentum. There is passion. There is brilliance. Have you seen it? Start looking.


 

If you build it, they will come.



So, I am creating a shared space, an inviting space. Come in and let’s talk. But only if you are willing to listen, to accept my space, my identity, and my approach. Then I can respect yours. I am reaching out so you can make the changes you need to move towards your “expert” position regarding Autism. You will never fully achieve it but, hey that’s what they said about me many times in my life. It can be your aspiring goal. Challenge with me. Be my ally. Be curious and be aware of your own role, position, space in the “expert” continuum and what you can do to affect change. Don’t be something you’re not. Don’t assume others are something they are not. Stay in your own lane and accept and respect the lanes of others.


And always remember. Autistic voices relay the Autistic “expert”. Only they can tell you, show you, illuminate you. Respect them, hear them, never underestimate them. We know what we’re talking about. Listen and learn.


 

References


Adams, D., Stainsby, M. and Paynter, J., (2021). Autistic Mothers of Autistic Children: A Preliminary Study in an Under-Researched Area. Autism in Adulthood.


Crane, L., Lui, L.M., Davies, J. and Pellicano, E., (2021). Autistic parents’ views and experiences of talking about autism with their autistic children. Autism, 25(4), pp.1161-1167.


Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., Leekam, S., Milton, D., Parr, J.R. and Pellicano, E., (2019). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), pp.943-953.


Talcer, M.C., Duffy, O. and Pedlow, K., (2021). A Qualitative Exploration into the Sensory Experiences of Autistic Mothers. Journal of Autism and Developmental Disorders, pp.1-16.


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