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Self-identification is valid. Formal identification is a privilege.

Updated: Jan 31, 2023

This statement seems to cause some confusion. Some people seem to believe that this refers solely to the cost of privatised healthcare and the privilege of being able to afford it. This erroneous belief is then extended to mean that self-identification isn't valid in the UK because the NHS is free at the point of contact.

The privilege of formal identification involves a lot more than money. These are just a few of the barriers facing Autistic people in the UK:

  • The limitations within the diagnostic criteria mean that formal identification is much more likely if you are: a child, a cis male, heterosexual, white and if you display obvious Autistic distress.

  • To be clear the limitations of the diagnostic criteria also mean that you may struggle to be formally identified if you are female or AFAB (assigned female at birth), if you are LGBTQIA, if you are Black, brown or belong to another race or ethnic group that is marginalised within the UK, if you are an adult, if you are able to hide your distress and/ or mask your Autistic mannerisms.

  • The NHS is a postcode lottery, some areas do not have the capacity to offer adult assessment. Even in areas that do offer adult assessment, some GPs may act as gatekeepers. People in the UK in 2022 are still being met with comments such as “you don’t look Autistic” and this is being used to deny assessment.

  • The waitlist for assessment on the NHS is usually several years long. This is unmanageable for some people who need to access support. It can also negatively impact the mental health of an individual who feels like an imposter among their own community until they have received formal identification.

  • Even if someone lives in an area that offers adult assessment and has a GP that is willing to refer them, they often wait for years. They may still then be met with an assessor who uses outdated criteria or stereotypes or who doesn’t understand or recognise masking. They may still be denied formal identification.

  • Although some people find great benefit in formal identification it is important to recognise that formal identification has the potential to have downsides too. Ableism is real. Formal identification can be used to deny access to mental health support. It can change how professionals communicate with you, some feeling the need to infantilise, undermine or belittle Autistic people. Formal identification of Autism can mean that physical illnesses or conditions are overlooked or denied. It even has the potential to impact how our ability to parent is perceived.

For all these reasons and more self-identification is valid. It’s valid in the UK. It’s valid now. You don’t need anyone’s permission to know who you are.

The privilege is not just having funds to access private medical care. The privilege is everything about you and your situation that you don’t have to overcome to access formal identification without any risks.

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