PIP for Aspergers

exarmydreamer

Just completed the AQ test, (just for the hell of it) and scored 44. Well no surprise there. Nothing I didn't know already and this is my only stress free form of social communication - on here, because it's on my own terms.:rotfl::rotfl::rotfl:

nannytone_2

i scored 41 pn the test, but as i dont know what that means, im no wiser!
is there a degree of hireditry with ASD disorders? i only ask as my grandson that passed away was a strange little boy. he didnt play with toys and didnt speak. he had no problem with eye contact, but was only interested in his parents and brother. he would chase round with his brother, but never played with toys together.
he became ill at 18 months so its quite hard to say if he was 'normal'
he contracted viral encephalitis, and was in a coma for 5 weeks and left severly disabled after, although mentally he seemed fairly intact.
his personality was the same ( the doctors were very suprised) but he was far more sociable. he wanted attention from anyone and everyone.
i'm just rambling here... it's all should/woulda/coulda.
something i will never find the answer to.
i really wish i didnt think so much!

wantsajob

I have never heard of Personal Independence Payment. It sounds like a nice name. It says what it is for, while getting rid of the "disability" moniker. I have a feeling some, including those administrating it, will forget about the "Personal Independence" bit, and this will impact on people with Aspergers Syndrome (AS).

Regards diagnosis, there is a certain amount of clinical judgement involved, yes, and this can go wrong. I think part of it depends on the quality of care and time they are able to spend. I myself, as someone with AS, was originally misdiagnosed by a psychiatrist, who saw me for less than 15 minutes, with Schizophrenia and put on anti-psychotics which did nothing other than give me the terrible side-effects. That lasted quite some time, so yes it took a long time for me to eventually be diagnosed with AS. Apparently this experience is not too uncommon. Though at school one teacher mentioned "concern for social development" in his report on me, the condition was practically unknown at that time and never picked up. I eventually stopped attending school as I found the bullying too difficult to deal with, so had no GCSEs. Luckily I later managed to go to College, get A levels, go to University and get a first-class honours.

I have heard of one case who, in a mental health nurse's opinion (with extensive experience of AS), had a personality disorder, but their parents pressed for the diagnosis of AS and that's what was given. Presumably they read up on AS and interpreted their offspring's behaviour through the diagnostic guidelines. Replacing one diagnosis for one which explains difficulties in a different way is understandable, but I cannot see why someone without any difficulties in life would want to try get a diagnosis of AS.

I would be put off claiming DLA due to the assessment aspect. It involves meeting a doctor you don't know who has an 'agenda'. I would find it difficult to talk about my difficulties with such a person, and convince them of my need. After all, that's what my disability makes difficult for me is interacting with others. How do you communicate in person that you have a communication problem?!

exarmydreamer wrote: »

It's a very difficult dx to get your head around as a parent, it's like mourning for a child's future or what you perceived to be their future. BUT, you soon realise that every achievement is a wonder and they are all clever and brilliant in their own way. Please don't misunderstand when I say mourn, I love them to bits but every parent secretly wishes their child to be without problems.

You have to remember that most of their difficulties are actually due to "normal" or neurotypical people's difficulties. Namely their inability to appreciate people might behave different socially to themselves.

exarmydreamer

wantsajob wrote: »

You have to remember that most of their difficulties are actually due to "normal" or neurotypical people's difficulties. Namely their inability to appreciate people might behave different socially to themselves.

You are right of course, I myself have Aspergers and only found out after my eldest was dx in 2002. I always wondered why it was so difficult to interact with people, although my own company was always best for me. It's my boy's confidence I worry about, their self esteem and ability to interact. I find now that I can't help them understand the secret social prompts because I don't understand them myself. I spent 17 yrs in the Army where straight lines and Regulations/Rules saved my life, although I should never have been allowed to join up, it was missed and I didn't know.

My in-laws don't understand me or our boys, they call them crackers, hence why they no longer visit. They are happier playing 1 to 1 and not bothering with most 'normal', people.

wantsajob

seven-day-weekend wrote: »

Quite often the problem for employment, even with high-functioning Aspies, is the interview. My son's girlfriend would never get through an interview, she cannot express her thoughts in a clear and concise manner and would also drift off into irrelevancies. She would not be able to decide what was relevant to the interview and what wasn't. She got her job through an organisation that helps people with this type of disability into employment, and did not have to have an interview, just a work trial.

As you can probably tell by my username, I had quite a challenging time finding a job myself. Like you say it was the interview. Interview after interview, I would always be rejected, and left feeling downhearted.

After passing a written test, but failing an interview for a graduate position in Civil Service, I sent an email to their diversity officer. That got me 6 weeks unpaid experience, and subsequently a 1 year paid contract. This was my first paid job aged 32. Like you say it's far easier to impress people when you can show them how you do on the job. I'm aware of numerous instances where people have convinced interviewers how great they are, but are actually useless at the job.

McKneff

Sorry all, but is it just me who finds the word 'aspies' offensive.

If it is only me, then please talk me out of it.

Wheekypigs

morganedge wrote: »

Is there a big difference between social anxiety and aspergers?

SA and AS are two different conditions but AS can often lead to social anxiety. SA on its own is what it sounds like; anxiety about social situations. AS, on the other hand, is more a lack of ability to understand social situations due to inability to read facial expressions, tone of voice and body language. For some people that leads to social anxiety and causes them to just avoid social situations altogether. For others, there is no anxiety. Sometimes the opposite. They may happily seek out other people and want to make friends but don't really know how to do it. They might think somebody is their friend but can't see that the feeling isn't mutual and follow them around all day anyway.

morganedge wrote: »

Is the test for asperger's definitive? - It can't be faked to fool a doctor for example?

Since autistic spectrum disorders are present from birth or very early childhood, the assessment relies heavily on input from carers and relatives about childhood development etc. The symptoms emerge too early to be able to fake them. You can't "fake" not responding to people as a baby, screaming when touched, stimming such as rocking, flapping hands or staring at spinning/blinking objects for hours. At that age you would be too young to understand what autism is or how to fake it.

Is it possible to read up on the symptoms and fake them in later life? Of course. But the fact that the person suddenly "came down with" a lifelong developmental disorder would probably strike the doctor as suspicious and would lead to the diagnosis of a mental health condition/personality disorder rather than ASD.

Ames

exarmydreamer wrote: »

I think it's a comfort, a familiar routine. I eat nothing but toast and anchor butter during the day and can take or leave anything else. I also eat at the same time and place, no matter what is going on.

My 7 yr old has had nothing but jam sandwiches for lunch since nursery, so that's about 3 yrs. Will not under any circumstances eat anything else. He will also not use cutlery, he has to use his fingers, then smell it, then touch it with his tongue and then eat it.

Evenings I have a few choices for him, but anything 'wet', has to go in a seperate bowl and no foods are to touch on the plate.

My oldest is a lot easier, he loves plain pasta and will eat bowls of it but still has the same ham and sauce sandwich every lunchtime as well, (about 7 yr of packed lunches).

I'm the same! I had baked beans and (not on) toast the other day - beans in a bowl, toast seperate. I also have to eat food in a particular order. So if I had a sunday roast meal I'd eat the potatoes first, then veg (in the right order), then the meat.

I'm also quite literal a lot of the time - a silly example, I was in Starbucks and logged into their wifi. It said something about 'here's wifi while you enjoy your drink'. My first thought was 'but what if I don't like the drink, does that mean I can't use it?'

And it took me years to realise that it was better to ignore the signs in pubs and cafes saying that the toilets were for customers only than to wet myself. (I suffer from urge incontinence).

seven-day-weekend wrote: »

People on the autistic spectrum can suffer from social anxiety, but they are two different conditions.

My son has never been formally diagnosed, he does not see the point and also it's quite difficult for an adult to get a diagnosis. He has been INformally diagnosed, by someone who would know about these things, after we all suspected he has AS.

Here's an informal online test

http://www.aspergerstestsite.com/75/autism-spectrum-quotient-aq-test/#.UR9fOh3vhsS

Here's my result:

Your AQ Test Score is: 28

The official criteria for Aspergers Syndrome is an AQ score greater than 32.
According to statistical analysis, 26 – 31 Is a borderline score. 86% of people with this score have can be correctly classified as having Aspergers Syndrome

I got 34. I have a lot of trouble with friendships and social situations because of my other mental health problems (bipolar, anxiety), but I'm quite creative.

Own_My_Own

Gentile wrote: »

Blah blah blah. Still no proper explanation as to why Aspergers needs to be classified as disabled needing full time care.

In the meantime actual disabled who live their life on a wheelchair make every possible effort to live a normal life, try to get a job they can do, feel embarrassed that they have to claim benefits.

However, there are many parents out there who are trying to milk the system getting their children diagnosed as Aspergers to get more benefits, get a blue badge for the car etc etc. A mate of mine said to me he was happy that he forced the school to get his kid diagnosed with Aspergers because he kept asking so many questions ! That is the truth. Its being misused by many.

So why haven't you reported all these friends to the DLA then ?
Could it be that a) they don't exist OR b) your a very weak person in real life and are scared of them finding out. So you come on here moaning about them to make yourself feel better.

Because I know, if someone I knew started claiming something fraudulently I would report them, not moan about them under a made up name.

McKneff wrote: »

Sorry all, but is it just me who finds the word 'aspies' offensive.

If it is only me, then please talk me out of it.

No you are not the only one. I detest the word the 'aspies' and let anyone who calls my son it know in no uncertain terms.

My son has aspergers but he is not an aspie, he is an individual.

There would be uproar if people with downs syndrome where called 'downies' or similar.

Own_My_Own

My son was diagnosed aged 16, after he tried to kill himself, by smashing his head in against a wall.

He had been to 4 different schools by then, and I had been made to feel like a useless parent most of my adult life.

He did not sit any GCSEs as his last school said he would not cope with them. So he sat ALANS instead. He sat ALAN 1 on the Monday and got 98% and ALAN 2 on the Friday and got 96% (ALAN 2 is like sitting A-levels).
And still nobody thought there could be a reason for this.

They diagnosed him while he was in hospital. The psychiatrist told me he could not believe that nobody had ever picked it up before.

Our lives changed after that, we know he wasn't just doing things to wind people up or just being rude. We started to speak to him differently, which has helped greatly. He has that lost look less now.

I went back to his old school, and spoke the Maps team. I told them he had aspergers and they replied with ' that explains everything'.
I was not overly impressed.

He went to 3 different colleges after that, to try to get some kind of further education, but he couldn't cope with them, and they couldn't cope with him.

He now gets ESA WP. He goes once a week and the man he sees is very nice. They are really trying to help him.

I have no idea what the future holds for him, but at the moment life is calm, and that is all I ask for.