Accuracy of Autism Diagnosis: The Amanda Baggs Case

Amanda Baggs as an Autistic

Background

Amanda Baggs is an adult who presents herself as autistic. She has gained much attention on YouTube with her famous video "In My Language" and has received much support and admiration from the Neurodiversity (ND) community, essentially because the behaviours she portraits (very autistic in presentation) together with her very high intelligence enhance the value of the ND message. The ND message is in a nutshell, that autism is not a disability but another way of being that should be respected for what it is. Many of us would certainly would agree that autism and autistic people should be accepted and included as much as possible in their community. However, parents, friends, and some autistic people have another side of autism to report, the disability side, the one that comes with health issues, etc.

The point of this post is not to dwell on these ND versus Non-ND issues as such but rather to try to understand why someone who is not autistic would "suddenly" present with the condition. The second point is to return to an essential problem, that has yet to be sorted out, that relates to the issue of diagnosis: What is autism exactly? How should it be diagnosed? When should a diagnosis be applied or not? How should autism be represented in our community and by whom?

A possible scenario that led Amanda Baggs to present as autistic

It is hard to watch a child with autism without feeling a great deal of compassion, especially when he is in a clinical setting being probed in a manner that he does not relate to by various professionals. When he displays anxiety, various forms of repetitive behaviours and presents with limited communication skills, in a world of exclusion and incomprehension, a common response is to feel compelled to help and to stand on his side, protect him and his choices.

Could it be what Amanda Baggs tried to explain when she talked about her experience of autism as a 17 year old girl recovering from schizophrenia?

“Many children (mostly autistic) at my school use those picture card things. Everything in the room is labeled with them, and they have schedule boards with velcro on them to attach the pictures. When they want to do something, they point to the picture (often with a lot of coaxing). My school's pretty neat actually. It's special-ed for ages 7?-22. There are maybe forty students, of all kinds of problems (I'm in the high-functioning class, recovering from schizophrenia). I get to work with one of the autistic girls once a week, and I really enjoy it. I want to do things like that professionally, eventually. Once I get out of this school and back to college...”

One school of thought on how to comunicate with autistic people is to “join” them in their behaviour as a way to relate to them. And it is indeed a very effective way to build a bridge of communication and this is for several reasons: One is that by joining someone in his or her behaviours, acting and being truly like that person makes you more likely to know what it feels like to be autistic and to be that very person. The second reason is that when you switch your perspectives to the one of an autistic person, you often present as someone much more easily reachable by someone with the condition, as long as you do this with sincerity. Judgements and conventions are dropped, leaving more fundamental and intuitive communication more easily available. A child with autism tends to relate more easily to such person than to someone presenting with conventional modes of communication and way of being.

Could it be that Amanda Baggs wanted so much to help but not being able to do it professionally because of her psychiatric condition, she instead felt like doing it by being like it, meaning becoming autistic?

But autism is not condition one controls, that can be done at will, though it is no doubt a condition one can easily imitate, especially with some experience of it and observation skills, together with an ability to disconnect from reality.

And what if, on top of this greater compassion, such enacting also provided some public attention? Presenting this new Autistic-like persona more incredible still, by breaking the odds, against all expectations as an extreme behavioural aberration combined with high intelligence, fuelling into the myth of the great autistic mind locked behind glass. Wouldn’t it be excessively exciting to experience such public attention, especially if the person acting it, would never have had the chance to become anyone who attracted attention without these false claims?

Autism does not come with schizophrenia and as a matter of fact according to both the DSM-IV and ICD-10, the diagnoses are mutually exclusive: “criteria are not met for another specific Pervasive Developmental Disorder or schizophrenia”, as stated in the DSM-IV. So Amanda Baggs cannot have both autism and schizophrenia, and as she has received many diagnoses before acting autistic, the most likely explanation is that she does not have autism at all.

The problem with this is of course that personalities faking autism misrepresent what the condition really is. It gives false and romantic views, and when this becomes endorsed by a community that is dependent on this type of idealism to justify its very own existence, we have worse consequences still.

But let’s be honest, Amanda Baggs has fooled the world with her pretending, and so has Donna Williams, and so has anyone who has chosen to represent autism from their own personal narrow perspective. Many in the autism community have created cult personae, taking autism as a bandwagon to fame. The day that we will start presenting autism comprehensively and in balanced manner for what it actually is, acting in non-biased independent ways, we will see the start of real progress and real answers.

Other link of interest

Amanda Baggs as Galiganinda Dulin

Example of Blog exchange on Amanda Baggs (comment section)

DSM-V Diagnosis criteria revised

Autism Syndromes: Clinical presentations associated with the condition