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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

  • In our case, a diagnosis came late (at the age of 20) and has definitely been beneficial. It provides an explanation for unusual behaviour and gives the reason why B always felt different - unable to match the peer group, complete school or hold down a job.

    Not having a diagnosis did not mean that there was no stigma! There was the stigma of being 'not right in the head', which was often said by people who couldn't understand what seemed to be contradictions (without the explanation of ASD). There was also the stigma of being lazy, stupid, hysterical or attention-seeking - again, accounted for by a diagnosis of ASD.

    So, although I do have sympathy for a parent who is hesitant, my own opinion is that a diagnosis is essential to save a young person's education chances. And of course, it is then important to put in place measures to protect children from the harsh battering life can dish out at an age when they should really be protected and nurtured.

    Having said all that, I also agree with Shek that people learn to cope over time. I have been amazed at the changes I have seen in individuals on the spectrum.

Reply

  • In our case, a diagnosis came late (at the age of 20) and has definitely been beneficial. It provides an explanation for unusual behaviour and gives the reason why B always felt different - unable to match the peer group, complete school or hold down a job.

    Not having a diagnosis did not mean that there was no stigma! There was the stigma of being 'not right in the head', which was often said by people who couldn't understand what seemed to be contradictions (without the explanation of ASD). There was also the stigma of being lazy, stupid, hysterical or attention-seeking - again, accounted for by a diagnosis of ASD.

    So, although I do have sympathy for a parent who is hesitant, my own opinion is that a diagnosis is essential to save a young person's education chances. And of course, it is then important to put in place measures to protect children from the harsh battering life can dish out at an age when they should really be protected and nurtured.

    Having said all that, I also agree with Shek that people learn to cope over time. I have been amazed at the changes I have seen in individuals on the spectrum.

Children
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