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Not Autisitic enough

Al 1

Hi Everyone

i have just been for an assessment at the Nhs centre in Sheffield. I comcluded a session of 2 hours of assessment mainly verbally asking me questions and at the end of it I was informed that had I been assessed as a child then I would of got an ADOs test. It was explained that whilst I have many Autistic traits then this is not enough to warrant an ADOS test, which feels a bit like telling someone with 1 leg that can't be provided with a wheelchair unless they have no legs.

i went because I had an idea after my son was diagnosed and I also think my dad has had it for years, given I now know quite a lot about the condition. I racked my brain back to my childhood and now present day and I am clearly Autistic, but clearly the view is that if you are not Autistic enough then basically you can't get the same support Which is very fustrating for me. I was further told that basically I had adapted through learnt behaviour and that I found strategies and routines in my life that suit my situation and by default I have indirectly protected myself in some ways. When I basically explainer at the end  of how I could be defined with Aufistic traits, yet effectively not be Autistic enough it was positioned with me that 'The reason I taken this literal view was based on my Austism'.

So basically, I am just sharing this with this network to look for other people's experience where they may feel let down by the process to gain an ADOS test and the relevant support.

Thanks for listening and appreciate any feedback.

Al

Parents

  • For the sake of argument, if someone had cancer, or was deaf, they might 'cope' or 'not cope' (as defined subjectively by an observer). Two people with the exact same clinical symptoms could develop very different coping mechanisms, based on their situation, experiences, support or lack of etc. 

    Nobody in their right mind would go on to suggest that the person 'coping well' with deafness or cancer was not actually deaf or suffering with cancer.

    This is why, when I saw that Horizon program in which Simon Baron-Cohen suggested that diagnosis should only be given to those 'not coping', I wanted to shout 'but that's completely unscientific!!!' at the TV.

    Also, regarding gender, like it or not, males and females were/are socialised in very different ways whilst growing up, arguably more rigidly so the further back in time you go. Girls who were/are introverted, attentive to detail & follow rules at school probably won't get picked up. As they grow up they may well act out obsessions completely differently (which is why I'm sick of male-centric assumptions & diagnostic questions about car number plates, dinosaurs, maths, trains etc.)

    Due to different socialisation, i.e. availability of socially acceptable options, girls can be more likely to obsess over, for example, collecting dolls, toy ponies, clothes, info on cute animals, and when older, info on film or pop stars, putting on perfect make up as a ritual, doing housework perfectly, repetitive crafts. I'm not saying this is always true of all females on the spectrum, just that activities like that are far less likely to get noticed as 'Aspie'.

    Secondary depression & anxiety for undiagnosed AS women is almost inevitable, women tend to turn in & blame themselves for 'failure' to fit in or cope, rather than acting outwards as many males do, so again are less visible. The depressed, anxious woman who shuts herself away (perhaps hiding behind a domestic role) is very easily dismissed medically, not so much the man out there in the world, acting 'oddly' in front of a variety of people.

    Women were/are socialised to be the ones who 'look afrer' and nurture others. Boys/men tend to be socialised to expect to be 'looked after', as well as having more of a general sense of 'entitlement' instilled. For example, men expect to always be paid for the work they do, whereas women are generally expected to work unpaid when performing housework & caring.

    I realise this is slowly changing, and anecdotally there are many individuals these days who thankfully don't fall into these generalisations. I'm referring more to women who were brought up a few decades ago when the world was even more sexist, and still-dominant prejudices, particularly among doctors.

    In my opinion, because of differences in socialisation, perception and 'sense of entitlement' women with AS are far less likely to access accurate diagnoses. This is discrimination based on gender, i.e. sexism, and people like Simon Baron Cohen who currently play into this (writing male-centric diagnostic questions, using loaded phrases like 'extreme male brain') have a responsibility to re-examine the effect their words and actions are having.

Reply

  • For the sake of argument, if someone had cancer, or was deaf, they might 'cope' or 'not cope' (as defined subjectively by an observer). Two people with the exact same clinical symptoms could develop very different coping mechanisms, based on their situation, experiences, support or lack of etc. 

    Nobody in their right mind would go on to suggest that the person 'coping well' with deafness or cancer was not actually deaf or suffering with cancer.

    This is why, when I saw that Horizon program in which Simon Baron-Cohen suggested that diagnosis should only be given to those 'not coping', I wanted to shout 'but that's completely unscientific!!!' at the TV.

    Also, regarding gender, like it or not, males and females were/are socialised in very different ways whilst growing up, arguably more rigidly so the further back in time you go. Girls who were/are introverted, attentive to detail & follow rules at school probably won't get picked up. As they grow up they may well act out obsessions completely differently (which is why I'm sick of male-centric assumptions & diagnostic questions about car number plates, dinosaurs, maths, trains etc.)

    Due to different socialisation, i.e. availability of socially acceptable options, girls can be more likely to obsess over, for example, collecting dolls, toy ponies, clothes, info on cute animals, and when older, info on film or pop stars, putting on perfect make up as a ritual, doing housework perfectly, repetitive crafts. I'm not saying this is always true of all females on the spectrum, just that activities like that are far less likely to get noticed as 'Aspie'.

    Secondary depression & anxiety for undiagnosed AS women is almost inevitable, women tend to turn in & blame themselves for 'failure' to fit in or cope, rather than acting outwards as many males do, so again are less visible. The depressed, anxious woman who shuts herself away (perhaps hiding behind a domestic role) is very easily dismissed medically, not so much the man out there in the world, acting 'oddly' in front of a variety of people.

    Women were/are socialised to be the ones who 'look afrer' and nurture others. Boys/men tend to be socialised to expect to be 'looked after', as well as having more of a general sense of 'entitlement' instilled. For example, men expect to always be paid for the work they do, whereas women are generally expected to work unpaid when performing housework & caring.

    I realise this is slowly changing, and anecdotally there are many individuals these days who thankfully don't fall into these generalisations. I'm referring more to women who were brought up a few decades ago when the world was even more sexist, and still-dominant prejudices, particularly among doctors.

    In my opinion, because of differences in socialisation, perception and 'sense of entitlement' women with AS are far less likely to access accurate diagnoses. This is discrimination based on gender, i.e. sexism, and people like Simon Baron Cohen who currently play into this (writing male-centric diagnostic questions, using loaded phrases like 'extreme male brain') have a responsibility to re-examine the effect their words and actions are having.

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