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?

[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"

[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.

[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.

[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.

[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.

[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.

[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.

[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 :)

[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.

[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.

[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

[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]

"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

[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]

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?

[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?

[cussandroid]

I've just read Tony Attwood's huge book on Asperger Syndrome. In it, he says that some people can have shadows of AS - ie, can be affected by it but not necessarily to a diagnosable extent. He is pretty upbeat about Aspergers.

Amberlight, can you recommend any resources for someone who is NT, is married to someone who appears to have shadows of AS, and wants to continue in the marriage, just make it a bit less jarring - for both parties? WWYD?

(Short of hiring you as interpreter, obviously...)

[garlicScaresVampires]

Amber, we've talked about this much before (I had a different username) and I think it's likely that today's children, who have been diagnosed with Asperger's, will enjoy a smoother ride in relationships than today's 30+ Aspies. The education system picks them up early, aims to teach in appropriate ways and provides guidance on living successfully in an NT world.

I remember your talking about your parents, who seemed remarkably foresighted and determined to provide you with the best start in life. They succeeded! Most, as you know, were unaware of AS disorders - and, if aware, frightened of them. Without suitable support, very many Aspies must have grown up scared, disorientated and embittered.

Although I now think of my ex as personality disordered rather than Asperger's, the behavioural similarities can be striking. This is why I try to convey that - when talking about adults in unsatisfactory relationships - the diagnosis is pretty much irrelevant. What you need to be looking at is whether you can live, happily, with this particular set of behaviours?

Of course, it's a whole different matter when the relationship is sound but both partners feel the less-NT one could use a diagnosis and some assistance. But they're less likely to be posting on this board!

catdoctor, you asked about 'love'? There's a beautiful blog post by an Aspie man, much-referenced but I've lost my bookmark: He describes an exercise in which he and his NT wife were asked to write what love means. He wrote about feeling as though the sun shone on his face when he looked at DW :) She wrote about acts of sharing, doing things together, feeling like a team. He learned something valuable from the lesson - but what he didn't (perhaps can't) see is that his love was all about his feeling, while hers was about mutual give-and-take; blending.
Amber might have the link. It's a delightful blog. Good luck on your journey, whichever direction it takes.

[bubblegumpop]

Yes it's neurological as it's not mental illness. It is classed for medical referrals as a mental disability. There are only 2 categories. Physical or mental. So it falls into the latter. Not to be confused with mental illness, which as you say can be cured. Autism obviously can't.

Indeed the guidelines have changed. Aspergers in old money was high functioning. You are now either asd or not. Then other learning difficulties are diagnosed at the time if they can be, or queried on the diagnosis.

So yes it's all very thorough. But if people are so sure and it's causing so many issues. They need medical help.

[amberlight]

(Strictly speaking, it's a neurological condition rather than a mental one (mental health conditions being ones that are temporary and can be treated in some way). Autism is a different brain design. There's a big debate about whether it's a disability or difference. It has to cause more than minor problems with everyday life for someone to get a diagnosis of it. I'm not bothered by the word disability, myself. Others are. Don't mind either way.

Autism and asperger syndrome are the same thing in the new diagnostic standards (DSM V). Neither is high functioning. But autism sometimes happens at the same time as a learning disability, which is where the 'low functioning' thing comes into it. They mistook the autism symptoms for learning disability symptoms, and now they've realised they were two different things.

When they look at life outcomes, even those of us with high IQs for some sorts of testing can have massive problems with other aspects of life e.g. friendships, coping with change, keeping a job, independent living skills etc. IQ isn't the same as social skills nor common sense, and those two things are what matter. Otherwise we can know everything there is to know about subject X and yet not know how to use that knowledge, or how to persuade anyone else to work with us on it.)

I never expect others to have to do hard work for me if I can do it myself. If my behaviour is a problem for others, I want to know. I may not be able to do much about some of it, but at the very least I can help them find some answers and some strategies. Same with dh. If he's done something that's caused me any stress, I tell him and he and I work out what to do to solve it. It may help that we're both on the spectrum and can communicate in the same way, I guess. But I do a lot to help people understand each other when one is NT and the other is AS. Sort of 'interpreter work', I guess.

[bubblegumpop]

Aspergers is on the autistic spectrum. Autism and all disorders on the spectrum are classed as mental disabilities. That is what it is. A lot of people don't realise this sadly with it being the new fad label. This is why the diagnosis process is so complex. It's a lifelong mental disability, which never goes away. Although many with aspergers are very successful. It's still a serious diagnosis.

Some people on the autistic spectrum are high functioning, others not so. It's classed as disability for disability living allowance. Some people on the autistic spectrum need lots of help. Aspergers is high functioning. It's more complex than just being a different normal.

The only way you'll get to the bottom of what's causing this is with medical help. To get the real help, you need the support of a diagnosis of whatever, so they know what they are trying to treat.

If he won't go, maybe you can start by seeing the gp asking for his advice. However autistic spectrum or not, hes got to want to help himself. If he refuses knowing the stress it's causing you, well you have to decide what to do.

[catdoctor]

bubblegum, amber - I take on board everything about diagnosis, what's genuine ASD vs shitty behviour - how do I broach this with DH who is sensitive to the point of paranoia? Any negative comment from me will put him 'in his cave' probably for days. I'll repeat myself - I have no problem doing whatever I can with my behaviour to help him - I have been trying for 20yrs, it is unreasonable of me to expect/hope he'll come part way to meet me?
I'm interested you think it is a disabilty - lots of stuff I've read implies it's just a different normal - in my DH's own words - 'I reject your reality and replace it with my own'.
Please don't be angry with me if I'm getting the wrong end of the stick - I posted originally in a 'well it won't hurt to see what's out there' way and seem to have stirred up a hornets' nest. I had no idea. How else can I learn unless I ask ?.

[amberlight]

For further clarity, I know plenty of people on the autism spectrum who are clergy, accountants, lawyers, surveyors, artists, poets, authors, etc etc who are thoroughly responsible, don't take silly risks with money or other things and are jolly nice people. I also know plenty of people who aren't on the autism spectrum who make a total mess of money, relationships and everything else.

We are bad at spotting social cues, get exhausted quickly in social or overwhelming environments, can have our pet obsessive hobbies, and find change hugely difficult to cope with...but there's nothing in the diagnosis about being incompetent with money etc either.

If you've met one person with autism, you've met one person with autism.

[WhoseGotMyEyebrows]

HullEnzia That bus thing rings lots of bells for me with my dad. He always did that as I was growing up. He would get anxious about the bus being late as well. It meant that I was always tense and anxious as well as I knew he would be. As a result I have had problems with anxiety as an adult. It can have a knock on effect I think.

[bubblegumpop]

^If I cry he walks off. He doesnt initiate hugs or kisses. He doesnt like cuddling up. He never compliments me.

He is however affectionate with the DC's.^

It's things like this, that an outsider, not blinded by the ASD label can see as obvious signs too.

If a person with ASD, lacks affection, some do, some don't. If they do. it's a blanket thing in general.

So he'll show affection freely to the dc's but not with you? Doesn't sound very ASD, plus with the things he says, he just sounds rude and not that in love with you.

Again people seem to want to make ASD "fit" to try and justify the shit behaviour of their husbands towards them. It's just madness.