• Replies 1 reply
  • Subscribers 25 subscribers
  • Views 528 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Finally got diagnosis!

Daddy of Two

After nearly 18 months, we've finally got our Son to assesment.


He has been diagnosed with ASD, and we feel releif that finally we can go forward with all the help he needs.

It's been a stressful journey - the local NHS has a significant backlog of assesments waiting and due to pure bad luck we ended up on that waiting list quite far down the list.

(GP lost first referral lettter, then the request for assesment was refused, after going through CAF, the GP re-referred, but sat in the referral letter all last summer. After that, the NHS sat on the referral for nearly 6 months, because they were in between 'funding pathways' - and the CCG had not comissioned resource to deal with the 450 or so people on the queue, and decided instead to just take the new referrals coming throgh after Jan this year. All the waiting list ones had to have a separate pathway comissioned, which is how we finaly got him seen. Not until getting th elocal MP involved and writing to complain about the poor communication and handling of our son's case!).

Anyway - we're here now.

What is confusing is the actual diagnosis terminoligy.

As I understand it, they no longer use terms like 'Aspergers, High functioning or classic autism . Instead they just say 'ASD', as the scoring system has changed.

This confuses us as we keep seeing Aspergers etc referred to - and we think our son fits under that description.

Anyway, we're busy looking at all the resources available, and ensuring the strategies we already have in place are reinforced.

Parents

  • Well, your question should provoke something - watch this space!

    Asperger's, high/low functioning, mild etc are all terms that should no longer be used, hence the move to make ASD universal. Some people with 'older' diagnoses will cling to those terms, but for newbies they are best avoided. Once we have a 'single' term, it will be easier to say to people 'little Johnny is AS' than 'little Johnny is a high functioning person on the autistic spectrum but he's not that bad'. Wrong, wrong, wrong. If you claim that he is 'high functioning' you'll set him up for no end of harm when he fails to function 'highly', and he will.

    You'll find that those of us with a diagnosis are trying not to use those terms and are actively encouraging others not to, precisely because they are confusing! I am not alone in finding those words thoroughly discriminatory and offensive.

    We are AS people, that's all. It's nothing to do with 'points', it's to do with the diagnostics that are improving. A person isn't awarded ASD when they accumulate enough 'points' but that's the impression it gives sometimes. We still all share the same problems and suffer the same things, and don't let any non-AS person tell you different.

    You'll gather what's going on as you read along (and hopefuly learn along) with us, but please do try to avoid terms that many of us find offensive. It can be a minefield, sorry. People will still use confusing terms like aspie etc, that's OK because it's what they are used to and we understand it, but if we all keep using ASD then a lot of the confusion will hopefuly disappear.

    Finally, welcome to the Community, we hope we can help, and we try! And congratulations, it seems you have a really switched on assessment team Smile

Reply

  • Well, your question should provoke something - watch this space!

    Asperger's, high/low functioning, mild etc are all terms that should no longer be used, hence the move to make ASD universal. Some people with 'older' diagnoses will cling to those terms, but for newbies they are best avoided. Once we have a 'single' term, it will be easier to say to people 'little Johnny is AS' than 'little Johnny is a high functioning person on the autistic spectrum but he's not that bad'. Wrong, wrong, wrong. If you claim that he is 'high functioning' you'll set him up for no end of harm when he fails to function 'highly', and he will.

    You'll find that those of us with a diagnosis are trying not to use those terms and are actively encouraging others not to, precisely because they are confusing! I am not alone in finding those words thoroughly discriminatory and offensive.

    We are AS people, that's all. It's nothing to do with 'points', it's to do with the diagnostics that are improving. A person isn't awarded ASD when they accumulate enough 'points' but that's the impression it gives sometimes. We still all share the same problems and suffer the same things, and don't let any non-AS person tell you different.

    You'll gather what's going on as you read along (and hopefuly learn along) with us, but please do try to avoid terms that many of us find offensive. It can be a minefield, sorry. People will still use confusing terms like aspie etc, that's OK because it's what they are used to and we understand it, but if we all keep using ASD then a lot of the confusion will hopefuly disappear.

    Finally, welcome to the Community, we hope we can help, and we try! And congratulations, it seems you have a really switched on assessment team Smile

Children
No Data