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How important is a diagnostic label for children?

dadof4

Hi

I have a child with Asperger's Syndrome.  For us and for him this getting a diagnosis was important as it helped us have a clearer understanding of our son and for him it made him feel less alone.  He told us a few years later that he had felt lonely because he was different from everyone else.  After diagnosis he felt that he was not on his own anymore. 

I only ask this question as I wanted to see if we were alone in feeling that diagnosis was important for children.  I have had conversations recently from people within various professions who have questioned the necessity for getting a diagnostic label as it can be damaging to the child's future, possibly putting limitations on them.

I understand the arguments for not needlessly labelling children and my feeling is that if their condition, whatever it is, is having an affect on their life then it is necessary to get a dianosis so that there is a clear understanding as to why they are having these difficulties and so that support can be more easily directed to meet their needs.

In the ideal world there would be no need for a diagnosis of anything as children would have their needs met on an indivualised basis but unfortunately we do not seem to be anywhere near living in this world.

Let me know your views and opinions.  I welcome comments on either side of the argument.

 

Parents

  • Hi all

    I am really interested in this topic of "labelling" as we toiled over whether to get diagnosis for years.  We feared the "label", the impact on our sons future, would he miss out on opportunities he may otherwise have had in many ways including employment, would he be teased, would he be discriminated against and isolated an outcast.

    We eventually got the diagnosis for support reasons and over a year later, "came out".  Now, I do not know why we did not before. 

    We have nothing more to fear than other folk that are different, i.e. Asthma, epilepsy, diabeties, short sighted, deaf and so on.  If you think back 30 years epilepsy and asthma were not well understood due to a lack of awareness amongst the general public and there was a bit of a stigma around epilepsy.  Thank heavens we moved on and we accept and understand these differences nowadays.  This is where we need to take Autism to - acceptance by raising awareness and helping those that have not yet had autism touch their lives to not fear it, but understand more about it.  We fear what we do not understand.

    My 9 yr old son is proud of his autism and knows he is different, but also knows everyone in the world is different in some way.  He was only told 6 months ago. He like me, now takes the approach of, we want to help the other families that do not find it so easy as us.  I hope that we can together help raise the profile of autism and show people that it is not the whole person in the same way, as my poor eyesight is not all there is to know about me.  Just a difference we live with and with a little understanding and acceptance a lot of the anxiety could be reduced.

    There is an Autism Alert card available in Scotland now which you can show to people if you are in a difficult situation i.e. melt down at checkout or to service providers i.e. a leisure centre.  I am sure there must be an equivalent available in England.  NAS will have details.  There is also a great little poster "How to Support someone with Autism" created by the department of health but the NAS will be able to tell you where you can get it from them I am sure.  Great for your local service providers and it makes them feel more comfortable about what they need to do and what they can expect.

    So, I understand in situations where someone needs no support there may be no need to "label".  For us, we were putting everyone under more stress trying to keep it under wraps and avoid being labelled "the bad boy" and being laughed at because of frustration/unusual behaviour.  It takes careful explanation and the less dramatic the better but we are all different was the key message for us. Timing is important too, when they are ready and if possible in advance of High School and teenage hormones.  There are lots of books to support such as "The Big "A"" Me, myself and autism.

    Ok, that's me got off the soap box at last - hope something in there helps.

     

Reply

  • Hi all

    I am really interested in this topic of "labelling" as we toiled over whether to get diagnosis for years.  We feared the "label", the impact on our sons future, would he miss out on opportunities he may otherwise have had in many ways including employment, would he be teased, would he be discriminated against and isolated an outcast.

    We eventually got the diagnosis for support reasons and over a year later, "came out".  Now, I do not know why we did not before. 

    We have nothing more to fear than other folk that are different, i.e. Asthma, epilepsy, diabeties, short sighted, deaf and so on.  If you think back 30 years epilepsy and asthma were not well understood due to a lack of awareness amongst the general public and there was a bit of a stigma around epilepsy.  Thank heavens we moved on and we accept and understand these differences nowadays.  This is where we need to take Autism to - acceptance by raising awareness and helping those that have not yet had autism touch their lives to not fear it, but understand more about it.  We fear what we do not understand.

    My 9 yr old son is proud of his autism and knows he is different, but also knows everyone in the world is different in some way.  He was only told 6 months ago. He like me, now takes the approach of, we want to help the other families that do not find it so easy as us.  I hope that we can together help raise the profile of autism and show people that it is not the whole person in the same way, as my poor eyesight is not all there is to know about me.  Just a difference we live with and with a little understanding and acceptance a lot of the anxiety could be reduced.

    There is an Autism Alert card available in Scotland now which you can show to people if you are in a difficult situation i.e. melt down at checkout or to service providers i.e. a leisure centre.  I am sure there must be an equivalent available in England.  NAS will have details.  There is also a great little poster "How to Support someone with Autism" created by the department of health but the NAS will be able to tell you where you can get it from them I am sure.  Great for your local service providers and it makes them feel more comfortable about what they need to do and what they can expect.

    So, I understand in situations where someone needs no support there may be no need to "label".  For us, we were putting everyone under more stress trying to keep it under wraps and avoid being labelled "the bad boy" and being laughed at because of frustration/unusual behaviour.  It takes careful explanation and the less dramatic the better but we are all different was the key message for us. Timing is important too, when they are ready and if possible in advance of High School and teenage hormones.  There are lots of books to support such as "The Big "A"" Me, myself and autism.

    Ok, that's me got off the soap box at last - hope something in there helps.

     

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