help re Asperger'ssyndrome

[catdoctor]

I've posted this in health too, but anyone out there with experience on Asperger's syndrome in adults? I've been with DH 20yrs and not sure how much more of his weirdness I can take - I am v suspcious he has AS and so maybe there's help out there for him or me? Any info on symptoms?

[garlicScaresVampires]

Lol, cuss, that's probably me too! I suspect I'm a BAP ... no idea what to do about it, though, if anything
Have you found any helpful reading?

[lisad123]

Wow some of this thread is quite hard to read. I'm not happy about the throw away comments about Asd being a mental illness, I'm pretty sure it's a physical one too. It's nit a chemical reaction, it's a permeant change to the wiring systems of the brain.
As for people saying they have Asd but having no dx, do you know how hard it is to get an adult dx'ed?? Most won't refer as they feel if you have coped for 30+ years your be fine, and paying private isn't an option for some.
As for not wanting help as it might remove dx can you show me where that comment is proved?

[bubblegumpop]

Show me where anyone has referred to it as a mental illness? Certainly not me. It's not a mental illness. It annoys me when people say it is. It is however classed as a mental disability big difference. That is fact.

It's hard to get a dx for this very reason as it's a serious diagnosis. Self diagnosis is just that. It means nothing. If people seriously think their partners are asd. Then the only people qualified to say so are those in the medical profession.

A self diagnosis is nothing. There could be other factors at play, it may not be asd at all. The current trend of women using the label to justify shitty behaviour is offensive.

A lot of people are also very ignorant as to what asd is and that it is a mental disability. That with a dx you are forever having to explain to people the difference between mentally ill and disabled. They just read and make things fit. Without realising what is really behind this label. It makes it harder for people who have been diagnosed with autism and do really need help. As people are far more judgemental than they were say 5 years ago. It's that label everyone is using unofficially to justify behaviours. Ohhhh he is aspie, asd. It seems everyone is.

So when people with a dx of autism, do seek help or understaning. A lot of judgement comes their way. As in, that's the naughty illness that everyone uses nowadays. So they are autistic get on with it. Everyone is using that excuse. That was a very, very recent transcript of what happened in a supermarket.

Mother of two autistic children, so it's like teaching me to suck eggs I'm afraid.

[lisad123]

"Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them" from NAS

"Autistic spectrum disorders (ASD) are a range of related developmental disorders that begin in childhood and persist throughout adulthood. They include both autism and Asperger syndrome" NHS

TBH Im never offended that people think they may have ASD as an adult, not everyone needs that label.

I have come across judgemental people, who think ASD is just a label but dont understand the full impact of having ASD. BUT I would never judge anyone who thought they had autism. We are pretty sure DH has autism but cant afford the cost of a private dx, it doesnt mean he doesnt have it.

As for teaching you to suck eggs, I always think we can learn plently from others with experience of autsim

[amberlight]

cussandroid, I find it difficult to locate reading materials that are almost any use at all. Many of the existing books on relationships are written by "NT" partners who are guessing what it's like to be us. Or by experts who are guessing too. Many are based on old myths that none of us are capable of empathy, that we all have bad tempers etc. In reality, it's mostly only the few of us who fitted those expectations that got diagnosed.

Now research is unpicking the realities, most of the relationship books out there aren't relevant or have information in them that is very misleading, and based on what people thought we want and thought we think....rather than what's actually happening. The autism charities are pretty horrified by some of the materials being published, which portray us as monsters who destroy all in our path. If they did it to gay people, or Black people, or people with cerebral palsy, there would be an outcry.

I'd look for books and blog about relationships that are written by people on the spectrum. A starting point is stuff by Wendy Lawson, a book written for teenagers but it's great fun called "Freaks Geeks and Asperger syndrome", and a look at www.autismandempathy.com/?p=478 where a good number of us are speaking for ourselves on empathy and caring.

[lisad123]

here

I heard this lady talk about relationships and autism a while back here is her website

and you can download her presentation here

[bubblegumpop]

It's classed as a disability. So when dealing with medical referrals or outside help. It's classed as a mental disability.

Sure your husband may have autism, then again he may not.

I am sure there are loads of men out there un dx, perhaps like your hubby, as understanding medically has come on.

However, I'm sure lots of people are just using it as an excuse, and so many people using it are making asd look like an excuse.

One example, the medical nurse here. I move hubby is in forces. Wanted to encourage me to cut incontinence supplies. As a compromise I get nappies not pull ups. For a 7 yo. This is the medical profession thinking I was just lazy and needed to up my game and toilet train him.

She failed to understand the dx of asd. Meant he has sensory issues. He can't feel pain or the need to toilet.

Everything is such a fight and people just using the label without understanding, so it makes getting understanding harder.

[cussandroid]

Yy, Amberlight, so much of your post rings true with me. I've been appalled by most of the books I've read so far on relationships - just incredibly pessimistic, and also sooooo patronising, as if the reader is just a child, even though married. I'm glad to hear the autism charities are equally appalled.

Thanks for those pointers. Too early in the morning atm for me to check them out, but I will do.

Thanks to you, too, lisad - again, I've read your posts before, always helpful, thank you so much.

[lisad123]

here your only allowed pullups for 3 months and if after that your child isnt toilet trained, you have to go back to nappies but i digress :)

cussandroid, glad to be of help :)

[StarlightMcKenzie]

Hmm, it's a physical disability, not mental. It is organic, which is physical. The brain develops differently and like any other parts of ones body developing differently, it is a physical issue.

[bubblegumpop]

Yes I know. But I repeat for medical purposes it's classed as a mental disability. Rather than physical. There are only 2 real classifications to define disability which are used. All the referrals will be to mainly mental health teams, also in referrals to ot, physio etc, it's referred to as a md.

As it's neurological. That's just the way it is. I'm not making it up for the hell of it. I've been through this twice and my mum is a mh nurse.

[amberlight]

This is why we got the Autism Act through parliament, because the health professionals had no idea how to categorise autism...so they mostly just ignored it completely. It's a "neurodevelopmental condition", and as Starlight rightly says, a physical difference in the way the brain is designed.

[StarlightMcKenzie]

There is no way on earth I am ever putting my child with ASD in the hands of any mental health service unless he has a mental health issue, which ASD is not.

If you can only class it as physical or mental, then it is physical. That is the correct and accurate term. When I filled in my DLA I wrote that it is a physical disability. Cerebra says to do this and they are right to.

[Lancelottie]

Starlight, DS has been referred to MH team before now. As they said, well, the bad news is that a lot of the problems are actually OCD rather than Aspergers. The good news is, OCD can be treated.

Bubble, not sure what help would or should be out there for an adult after diagnosis? Friend of ours is going through it at the moment, and finding, first, that it's very hard on them and on their family life; and second, that so far as we can tell, it will up their insurance premiums, possibly disqualify them from driving until 'reassessed', and lead to no help whatever. So why bother? Well, in their case, a desperate need to know that there is a real, fundamental difference, rather than just feeling guilty for not coping like the rest of the world.

[amberlight]

There's no problem driving with a diagnosis of autism. As it's a lifelong difference in brain design rather than a medical condition affecting driving ability in any direct way, it's not something that is notifiable to the DVLA. If a person has passed a driving test, they're as safe as anyone else.

Neither has it made any difference to any insurance premiums for anyone I know, as it's not notifiable to insurers either unless there is some new element of behaviour that suddenly makes a safe driver unsafe. But that wouldn't happen with standard autism anyway. I know of people on the autism spectrum who are advanced level driving instructors, for example Julia Malkin MBE.

It's certainly difficult getting a diagnosis through the NHS, but there are private routes available. It's made quite a difference to the lives of many people I've known (according to them), and certainly made a big difference to my life. Otherwise I had no idea why life was such a struggle and why I was getting things so wrong. It's allowed me to get assistance from social services, access training and support here and there (not a lot, but some), and explain to people why I communicate as I do.

[lisad123]

now wondering why local CAMHS (child adolencent mental health service) wont take a referral for a child with ASD, as "the difficutlies are caused by autism not by a mental health problem so they dont forefill our criteria"