Aspergers dx not going to be used anymore

[flowwithit]

I have just been told this today at our last dx meeting with psyc. Not even HFA will be used only autism dx from now on.
Has anyone else been told this recently?

That's right big blue bus. And the more research that is done, the more ' labels' will be created.
A school that simply Googles a label for tips rather than getting down on the floor and getting to know the child in front of them will never cut the mustard, imo.

I doubt it will change some schools attitudes sadly. Once they are stuck in their stubborn rut there is no budging regardless of dx. DS and I are plain riding it out till his school move in the summer.

They are still adamant to do things their way despite DS. They didnt even have the decency to acknowlege my email in the hols advising them or even talking to me in school when it started. I have decided its a case of stick it out and then when it gets too much pull him out. They are plainly and obviously unwilling to spend their funding and know that he only has till the summer hols left. Its not worth getting worked up over.

Some schools dont listen to proffessionals, they say they do and pretence of interest but carry on thinking they know best. Altering DSM 5 dxs wont change that I dont think...

Sorry, not read the thread yet, but here is a link to DSM 5 and the neurodevelopmental disorders page. Autism Spectrum Disorders is linked but other interesting disorders, too.

www.dsm5.org/proposedrevision/pages/neurodevelopmentaldisorders.aspx

This is a link that dolfrog recommended as well.

www.citeulike.org/group/12599/tag/dsm-5

I notice it's still a 'disorder' in DSM-5, not a 'condition.' I think the change to ASC is to try and make it sound less severe, personally. Whether that's to comfort parents or individuals or to make support harder to get, I don't know.

I personally prefer Aspergers to Autism at the moment, simply because Aspie sounds a bit more palatable and fits into a "nice" geeky stereotype mould (fits us well, DP works in IT and DS1 is mini geek ), whereas Autism is a bit more scary to the uninitiated.

I use Aspergers or HFA socially, but stick to ASD when dealing with his school, as they do not recognise or understand that he has ASD, despite letters from Dev Paed etc and I wouldn't want to water it down for them IYSWIM. Horses for courses - different terminology elicits different reactions from different people for different reasons.

This is the tack I'm taking for now, but as there is just sooooo much about ASD in the news lately, I probably won't feel the need to "hide" behind Aspie later on. DS1 diagnosed with HFA anyway - they don't "do" Aspergers here.

My DS2 was DX ASD, and definitely not AS as he had a speech delay. He's never seemed like other Aspies I know, so I'm comfortable with ASD. I can still see the advantage of a dual DX, AS/HF ASD, then you could pick and choose depending on the audience.

I just don't know how i feel about this. In some ways maybe school might be more understanding, bu it feels a bit like it is 'worse' iyswim. (still ostriching and in denial as i am). Although i just told dd2 who said it's good as sometimes she feels more 'autistic than aspergersy' whatever that means.

Will ponder it.

Hmmm. Ds just got the dx od as this month. Glad we got that before the change tbh as if fits with how I see him.

Same here notactuallyme. DS got dx of AS two weeks ago (based on ICD-10). This is what we were expecting, and how we see him - I'm still getting my head round it all but somehow it sits more comfortably with me.

WW

I have since bought a really good book which has a table showing the differences between autism! Hf autism and aspergers which is really interesting. There does seem to be just enough of a difference to be worth having?

What book is that notactuallyme? As I might look it up :)

Reading Tony Attwoods book at the moment and he prints that HFA and AS can be used interchangeably and Howlin states the amount of research saying there is a difference is balanced out with the amount saying there is no difference.

I don't agree with it , i think the spectrum should be made bigger not smaller.

Dd1 has AS and Dd2 has a dx of ASD, we suspect dhe is HFA but some of her traits are severe so she doesn't really fit anywhere on the spectrum.

Its taken me years to explain to dd1 that she has AS and her sister has ASD, now they will both be classed as ASD, dd1 will be very confused .

Hi coffe its The Aspergers Answerbook by susan ashley phd. Table is on pp 18 and 19. Really handy book.

I think there is a difference between AS and HFA (well for us there is), Dd1 AS wants to be popular and have friends but struggles to keep them, dd2 HFA doesn't care less who likes her or hates her.

All children on the spectrum are different, both my girls have Autism but the diagnosis of Aspergers means that (to us) the dd's have different diagnosis's because they have different needs. Dd1 has no speach problems but dd2 does. I wouldn't say dd1's is less severe than dd2 though as dd1 is harder work and struggles with life more than dd2 (because dd1 thinks more about things and things effect her more, dd2 can move on from a bad situation after a small melt down and then goes back to being her happy self where as dd1 would cry for days and get very anxious). Hope that makes sense.

They are individual and we treat their diagnosis's differently.

It doesnt say that it has been removed but,this is the only mention of asd in the DSM IV, I also noticed it does say retts does not meet criteria fror asd.

I think raising awareness about Autism will be the key as some, or perhaps most, of the general public see programmes about autism that normally show mainly the severe end of the spectrum. That's how they perceive a child with Autism.
I was one of those people until I started dx a few years ago

Thanks notactuallyme! Another one for my bookshelf :)

I think it seems a good idea because at the end of the day the exact cause/type/label doesn't describe ours and our kids' daily lives, it's the existence/severity of the problems that do. That's surely what we need other people need to understand - how well or not our kids can live their lives by themselves.

Hopefully it will stop people hearing the word autism and thinking Rainman or assuming all Aspies can run multinational computer companies. I think it will help future parents finding their way to DX - eg I had read Curious Dog in the Night and concluded that my DS couldn't have it because he wasn't that handicapped by his eccentricities. He was DX'd with Aspergers age 3.

I would also add this is not just about children but adults as well, I understand why a person with AS dx would want to retain it the problem is the idea of AS being a lesser form of autism, with images of Einstein and Bill Gates when the reality is there are many vulnerable people with AS who need extra support. Would Gary McKinnon- the hacker looking for aliens have been better supported with a dx of autism, I would say yes. Having worked for connexions for young adults with SN, AS was treated without the knowledge it deserves. Mainly as with all autism the variety in AS is huge from a person being able to live independly to those who need continual help.

The trouble with all is is that it treats autism as variations of one thing. It isn't. My non-verbal son doesn't share anything with someone with AS and if you looked at the reasons for their difficulties (development, triggers, brain damage - and if you baulk at AS being described as brain damage- my point enitrely) they're likely to be different. His particular underlying reasons for being autistic are probably different from some of the 5 other severely autistic boys in his class as well.

Hopefully in the future there will be more research leading to more specific testing through scans and blood tests ect which will lead to more specific dx and maybe meds or information about what will help.

But do the underlying reasons matter if they can't be treated? And the variations between kids can never be guessed in advance of meeting each one so a quantitative description, rather than qualitative, surely stops people having wrong expectations? From the terms Mild/Moderate/severe ASD They will have a rough idea how much work is involved and know that exactly what form that work/help/care will take is something that only becomes apparent as you get to know the person.
Also the quantitave approach allows for people's lifeskills to improve without perhaps an identity crisis that renaming might bring.