Too "well behaved" to have Higher functioning ASD..

moonriver said:

        With the Autism Act up and running and the fact that Autism now is virtually well understood in the mainstream WHY or WHY are parents coming up against a system that is actually harming childrens life chances.  

I guess, because Autism is NOT virtually well known in the mainstream. 
Why? Because the system is so muddled.

Autism Spectrum Condition was defined decades ago as a Developmental Difference, but there was no Department for Developmental Difference to slot it into; because then you would have to define Difference, which is virtually impossible to do and inadvisable because it brings up the old terms of Normal/Not Normal. And there is of course no such thing as Normal.

ASC is not a Learning Disability as many of us have above average intelligence and can sustain ourselves in the world as well as any NT.
ASC is not a Mental Health Condition, though along with a lot of other conditions, mental health problems can arise from the individual trying to cope. 

So ASC ends up being shunted backwards and forwards between professionals who are not specialists in the condition.
The connection with the American DSM has confused things even more. Okay, mental health problems can arise from having ASC and anxiety is often present in Asperger's through the stress of coping with the NT world and NT behaviour. But ASC is not at core a mental health condition. It's presence in the DSM indicates to people that it is.

I think the latest definition in DSM is going to add to peoples' confusion. Its 'Grading' system certainly caused me dis-quiet...
Two decades ago I began working in NHS Learning Disabilities. The clients I looked after had all been moved from the old psychiatric hospitals/asylums.  Within those Institutions they had been Graded... High or Low Grade.
Working with them in their beautifully kitted-out newly-built unit, where they were all treated as equal, I observed that whenever the clients had a disagreement with each other, an ultimate put-down was to call the less able opponent 'Low Grade'. 
Hence my dis-quiet with the DSM's new system. I see this as a step backwards. What sort of society are we that goes back to 'Grading' people?

This is all very dis-heartening when added to the posts on this site, where people report professionals incorrect interpretations of what ASC is and frequently deny people have it at all. I have recently seen these problems occuring both with a young child and an older man... despite all evidence indicating they each had ASC.
The system does not work well for old and young alike.        

Moonriver here, With the Autism Act up and running and the fact that Autism now is virtually well understood in the mainstream WHY or WHY are parents coming up against a system that is actually harming childrens life chances.  My son was diagnosed over 20 years ago after an intolerable battle with the authorities who let us down, not even an apology after they messed up my sons education and childhood through their negligence.  To hear that this is still happening is indeed beyond believable. 

Not much else you can but do longman,quite sad really,in our case weve really unlucky regarding people being off sick, or on maternity or being poop or leaving theyre postion or not sending information, in fact it probably beyond belivable,my son entered the system when he was 2 hes now 8 years and 1 month.

The problem remains, how many helplines understand that suicidal thoughts are common in autism? You don't have to be depressed first.

I know Samaritans are supposed to be genned up on autism, but it is no help tackling it as if the caller has depression, rather than in the context of autism.

As you say, carry on struggling or go to A&E. Just for want of health professionals properly understanding autism.

Thanks sofie, i sent an enquiry to Nas, i got reply back from the parent supporter telling me to try the things i have, so i guess we will carry on struggling. or go to A&e

Hi mumof4boys772,

I'm sorry to hear about your problems. If your son is feeling suicidal then please don't hesitate to contact us for help, we have a helpine that you can call or email http://www.autism.org.uk/our-services/advice-and-information-services/autism-helpline.aspx If you have immediate concerns please don't hesitate to phone 111 or go to A&E. Alternatively, you could discuss your concerns with his GP. The samaritans also have a helpline if you want to speak to someone http://www.samaritans.org/how-we-can-help-you/contact-us I hope you and your son get the support you need but if there is any way we can help, please let us know.

I really can sympathise with you, we have cme across so many stumbling blocks its unreal, my son is 8, hes been in the systen since he was around 2 and a half,  first off we had a real naff peadatrician then our sons senco has been off quite a lot, then my son got a cracking teacher who picked up on lots of things and bascially said hes on the spectrum, i then went into school to show them my war wounds,they get onto cahms, he goes to cahms, they say he needs testing for Asd, then his teacher left the school and moved out the county, then we have a report off a private Ot that says my sons symptoms are indicitave of sensory proccessing disorder,went to see the audiologist who says that 99.9% of children he sees that have hypercussis like my son goes hand in hand with ausitm.

Then the peadatrician goes on maternity leave, we go and see a cover peadatrician whom says its wrote in my sons notes if his behaviours continued hes get a written diagnoses however he basically said he cant do much and to wait till the normal peadatrician gets back!!!! which of course could be another year, meanwhile my son is not getting the help and support he needs.

Even with my son constantly threatening to kill himself we get no support what so ever.

Oh and i have to say the peadatrician was orginally going to diagnose him with high functioning autism and sensory issues depending on what school said, school never got back to her as the senco was off.

Anyway my point is you will perhaps come across many stumbling blocks,but keep strong. its a well known fact that children on the autism can be like this.

Hi Gothie and welcome

It sounds as though you have stumbled across a paed that certainly wasn't a specialist in autism. You are entitled to a "second opinion". There is a recognised procedure for this and a request cannot be refused. Have a look at previous posts ... community.autism.org.uk/.../"second opinion"

buried in those posts will be references to the NHS pages on the subject.

I'm afraid this is very much the problem - those that SHOULD help often aren't listening.

I read your account of the paediatrician's ill-informed comments in the light of what has already happened to me this evening. I've had a call from an agency paid by NAS asking me to commit a monthly payment to NAS.

Believing at first they were actually NAS, from the way the phonecaller engaged me, and they way they asked what things I felt NAS did best, and what the could do more, I tried to explain in particular why those at the abler end, both children and adults, suffer because professionals do not adequately understand the visible evidence, and make ignorant statements of this kind.

Then it gradually dawned on me that I was talking to a fundraiser who neither knew anything about autism or cared. All the stuff about thanking me for my support was leading up to pressure to commit to a monthly payment. They are being paid a large sum of money, she explained, just to canvas contributions.

Why am I a member of NAS? I've got Asperger's Syndrome. NAS has sent my details to a fund raising agency - they quoted my address and email at me, besides having my nuumber. If that's how cras NAS is, it is hardly surprising the message isn't getting out to anyone else.

So I fully sympathise with your difficulty. The people out there who should be doing everything to improve understanding of autism just aren't listening, aren't taking any notice.... NAS included.