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Fear of and Necessity for Labels

Jim V - mod

AndrewC posted this discussion in the guide, before I realised my mistake in how they were written. So I'm just creating this on his behalf so people can respond to the message.

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I know a number of people are put of going for early diagnosis because they fear labelling their child or are not themselves emotionally ready for that label.

Unfortunately, labels can also be necessary/hugely beneficial in accessing the right support services for your child, particularly re education.

 

Perhaps this would be a good thread for people to share what their concerns were/are about going for diagnosis, and whether obtaining a diagnosis has been positive or negative overall?

Parents

  • There are both pros and cons to having a diagnosis.

    I agree that having a diagnosis can give better understanding regarding behaviour and needs, and appropriate support. 

    However, because the general understanding of autism is still in its infancy, it can also lead to stigma and stereotyping.  So I can see why a parent might be hesitant.

    The mantra 'Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people and the world around them...' hides the vast differences amongst individuals on the spectrum.  And the disability is not static, particularly for those on the higher end of the spectrum.  We learn how to operate in society over time.  There are even qualified social workers who have a diagnosis (however, in the cases I know of, the diagnosis was made in adulthood - would they have been employed in such a job if the potential employers had known of an autism diagnosis?).

    Even the NAS seems more geared to the carers of children with autism, rather than those with autism themselves.  This is despite their laudable campaign for the rights of adults with autism (the 'I exist' campaign), and their work leading to the Autism Act.  The involvement of those on the spectrum is still marginal.  NAS local groups are primarily support groups for carers.  And it is disapointing that their current campaign on the mental health of children on the spectrum does not also include adults, despite the NAS 'I exist' campaign.

Reply

  • There are both pros and cons to having a diagnosis.

    I agree that having a diagnosis can give better understanding regarding behaviour and needs, and appropriate support. 

    However, because the general understanding of autism is still in its infancy, it can also lead to stigma and stereotyping.  So I can see why a parent might be hesitant.

    The mantra 'Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people and the world around them...' hides the vast differences amongst individuals on the spectrum.  And the disability is not static, particularly for those on the higher end of the spectrum.  We learn how to operate in society over time.  There are even qualified social workers who have a diagnosis (however, in the cases I know of, the diagnosis was made in adulthood - would they have been employed in such a job if the potential employers had known of an autism diagnosis?).

    Even the NAS seems more geared to the carers of children with autism, rather than those with autism themselves.  This is despite their laudable campaign for the rights of adults with autism (the 'I exist' campaign), and their work leading to the Autism Act.  The involvement of those on the spectrum is still marginal.  NAS local groups are primarily support groups for carers.  And it is disapointing that their current campaign on the mental health of children on the spectrum does not also include adults, despite the NAS 'I exist' campaign.

Children
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