Summary of 'The Curse of Being "High Functioning"' by Tim Goldstein

30 Apr 2018, in Neurodiversity

One of Uptimize’s subject matter advisors, Tim Goldstein, recently wrote a thought-provoking article entitled The Curse of Being "High Functioning" on the Autism Spectrum. The below is a summary of its key ideas.

The conclusion most reach is I talk like a neurotypical, I act like one, and I converse and engage like one, therefore, I must be a neurotypical like them.

Tim Goldstein has had a highly successful career in the tech sector. He’s autistic, without many of the more visible cues that would be picked up by neurotypical colleagues. He credits many of his career successes to his different thinking style. He also attributes a lack of understanding of this as the reason behind a number of career challenges.

In his recent article, The Curse of Being "High Functioning" on the Autism Spectrum, Tim makes a series of interesting points related to the difficulties he has experienced at work of coming across as ‘almost neurotypical’.

He mentions the common perception of autistic people as sitting on a linear spectrum of competencies, as compared to neurotypicals: this scale is what generates the ‘functional labels’ such as ‘low functioning’ and ‘high functioning’ that are often now seen as overly simplistic, and insufficiently nuanced.

For Tim, these labels are problematic as they effectively place autistic people on a scale of proximity to neurotypical thinking, whereas – as he points out – ‘even’ a ‘higher functioning’ individual such as he processes the world in a markedly different way.

The popular concept is if the person is ‘low functioning’ they have very high expression of most spectrum condition traits. For ‘high functioning’ the belief is the traits decrease across the board as the function improves. At some point the function is so high and the traits so low the ‘high functioning’ start being considered as being merely geeky normal neurotypicals. The Curse of being ‘high functioning’ is being evaluated by neurotypical norms instead of autistic ones.

‘Being seen as neurotypical’, Tim continues, ‘shifts the standards us high functioning autistics have to meet from being challenging to impossible’.

What does ‘being seen as neurotypical’ mean here, to Tim? He has graded some of his own challenges in the following graphic:

What’s interesting here is that while Tim is strong on some of the most ‘visible’ areas of social interaction, he nevertheless does have a number of ‘hidden’ challenges. In his own words:

A quick glance at the graph of my strength and challenge areas clearly disproves the popular concept that high functioning does not mean minimal challenges. I max out at a 10 for anxiety and have multiple challenges at 9 such as emotional processing, black-and-white rigid thinking, and ability to understand non-literal parts of communication.

On the other hand, in the highly visible areas such as eye contact, real time communication, dress, and appropriate vocal tone and body language, I show little to no challenge and perform on or above the typical norm.

The conclusion most reach is I talk like a neurotypical, I act like one, and I converse and engage like one, therefore, I must be a neurotypical like them.

To rectify this ‘curse’ – of being seen as ‘more or less neurotypical’, and having true challenges ignored and/or misunderstood, Tim proposes firstly a rethink in the old linear ‘functional’ scale. He suggests considering cognitive traits (for ALL, not just for neurodivergent or autistic people) using a cloud (360degree) model, as opposed to a linear one – he calls this the ‘Neuro Cloud’. In this way, nuanced traits can be better understood and recognized: and we avoid the problematic urban myth of so called ‘high functioning’ autistic people being seen as ‘basically neurotypical’.

Tim's own profile within his ‘neuro cloud’ model is shown below.

Tim: ‘I am sure you see the misleading implications when we consider developmental disorders in a low to high continuum; more important is your understanding of the random mixing of trait appearance and intensity in any given individual, whether neurotypical or neurodivergent’.

As understanding builds of neurodiversity at work, more people like Tim (diagnosed at 54) are receiving belated recognition for the skills and strengths they can bring to their work and their teams. It’s Tim’s hope – and ours – that more nuanced thinking around ‘strengths’ and ‘challenges’ will help both to provide inclusive workplaces for autistic people, and to spark a broader discussion of cognitive abilities across the ‘human spectrum’.  


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