The autism thread

yes 'label' is the only way to access help unfortunately. But be prepared for a battle to get a label and then a battle to get the support.


Curious about the speech and language therapy, I've only come across that where there are language development delays. - are you assuming there are? or is it a blanket recommendation?

Its really difficult now that HFA (High Functioning Autism) and Aspergers have been subsumed into the broader Autism spectrum (something NAS do not like). HFA is/was basically the same as Aspergers, but is characterised by language delays whereas Aspergers there is no evidence of delay.

That is really interesting. Mine was almost mute until he was 3 or so, and then went to a speech and language preschool. Goes with the HFA thing

It's been a long day and I'm about to crash for the night but I just wanted to make a few quick points:

- The reaction and contribution to this thread has been amazing. I toyed with whether I should start it or not as usually I'm a very private person. But on this subject I honestly believe the more we talk the more we, and others, understand. I also wasn't sure how many people would want to add their thoughts, advice and stories. So thank you for contributing and thank you for the positive comments regarding me starting the thread.

- I downloaded a number of TED talks on autism for the flight today - there's some good stuff there that's pretty short and easy to digest so well worth watching when you have a spare 5 to 20 minutes. I found the talk by Wendy Chung about the causes of autism and the research going on interesting, as was Rosie King's (paraphrasing: "why do we seem to strive for people to be "normal"? ")

- Thanks Irish Boy for the offer of coffee... as I'm only here for 2 days my diary is rammed but I might take you up on that offer another time (I have a team here now so this will be a regular trip)

Thanks again

I'll hit 50 this year, and was only diagnosed with Aspergers a couple of months ago. Looking back, it's had a significant effect on some parts of my life, and perhaps things would have been different if I'd been diagnosed as a child.

For one thing, I avoided university because I saw that as a massively social activity and it was absolutely something I did not want - it terrified me. For most of my life that has made very little difference - I was fortunate to be able to enter the career I wanted at university age without a degree - however in recent years, I was considering a career change and found that this wasn't possible due to lack of degree.

I've also realised that I have organised my life to minimise any possible stress - which mostly means that I try to avoid situations that I can't control. I have never ever wanted children - and although I realise that plenty of NT people also don't want children (and plenty of people with Aspergers do), I have recently wondered how much of that is related to my condition. I have always seen them as a source of stress and expense, and something you cannot control - and offering no plus points in return. I am aware than parents would tell me that the big plus is the unconditional love etc. - that makes no sense to me, which I suspect is related to the emotional / empathic issues related to Aspergers.

I get unreasonably stressed about situations that I cannot control - specifically situations that could go "wrong". Trivial things like being asked to go and collect some furniture which I think may not fit in my car. The idea that I may get there and find it doesn't fit suddenly seems like an insurmountable problem.

"Routine" is a common Asperger thing, and it definitely affects me - even to the degree that if I agree with somebody that we are doing <x> one evening and then they announce that we are doing <y> I struggle. My head was already "set" that we had planned <x>.

I have been made aware that I am often completely unaware of how abnormal my behaviour is and really don't have a clue.

I tend to be very literal, and interpret things very literally which causes problems in relationships - my most recent g/f makes it very clear when I've got it wrong, but that still doesn't make it any easier to avoid.

The "label" thing is interesting - although I was aware that some aspects of my personality were unusual, I didn't realise just how unusual it was - particularly in anything related to social activities, or trying to avoid them in the first place. Although I was encouraged to get the diagnosis (from a g/f, and an ex who agreed wholeheartedly when I mentioned it to her) I thought I would barely be on the spectrum - if at all. I was a tad surprised that for one of the tests, a score of under 30 meant you registered on the spectrum - and I scored 11.

At the moment, I regret getting the diagnosis. Lots of people say that it's a good thing because now I can get treatment (most seem to mention CBT) but actually getting anything seems surprisingly difficult. I do have a post diagnosis course that starts in Feb (4 x 2 hour sessions) - but that is a group course covering autism in general. Group courses for Aspergers suffers doesn't seem the best plan, but the diagnostic report seems to suggest that this course is the first step in getting some one-to-one treatment that is more specific. If nothing comes from that, I'll go back to the doctor.

The diagnosis has simply made me feel broken. Until I see personal evidence to the contrary, I doubt that treatment will make that much difference - I get the impression that it "teaches you to cope" with situations (there is no cure after all). But to me, that isn't a solution - I lead a fairly solitary life and I can make it more so - which means I don't need to learn to cope with those situations because I can simply avoid them altogether 99% of the time.
From a relationship point of view, I now feel that if I meet somebody new I am lying to them by not declaring my condition.

Although there were aspects of my personality that I knew were unusual - and some I didn't like that much - I did like myself. Being diagnosed has somehow made me doubt everything and has been a very very negative thing for my mental health so far.

Having said all that - I think it's definitely worth getting your son diagnosed if you suspect he's on the spectrum. Knowing this from an early age, and learning to cope with difficult situations will probably make his life easier, and will mean that he can make informed decisions about things that really can affect the rest of your life. Even if he's diagnosed, it's his choice to tell people - I still haven't decided whether to tell my employer - I do find my current work environment causes me more stress than I expect, and occasionally work from home. If I was to declare my condition, it would allow me to work from home far more often than I currently do.

Compared to other forms of Autism, Aspergers doesn't seem so bad. Many people with it are high functioning, intelligent, get decent jobs etc. But it can still make life surprisingly difficult.

My g/f told me that my behaviour wasn't normal and I should go to the doctor. I spoke to my most recent ex who said that she'd done some research after we split and she was fairly sure I had Asperger's.

Went to the doctor who initially gave me a leaflet with numbers for several different organisations and told me that until I was diagnosed by one of them, I could not get any mental health support.
However, having called them they seemed more focused towards depression.
I called NAS who told me to specifically ask the doctor for an autism diagnosis.
I was then referred, although I later found out it was to the wrong place, and that place forwarded it to the right place. Then it turned out that they'd sent questions to the doctor months ago, which she'd failed to respond to.

After much chasing, I was told that I was on the list - waiting times were about a year but there was a cancellation list I could join, which I did. My appointment came through about 2-3 months later.

I'm not sure what kind of test they did, a few questionnaires and face to face discussion. Some of the tests I couldn't really do because it was related to very early childhood and there is nobody that can comment on that.

I thought I'd post a quick update on this thread.

Last week we received the written diagnosis. Like hearing it from the specialist it was quite hard to read in black and white, despite us knowing Victoria had autism for a number of years. Along with the diagnosis were a number of recommendations for the types of support Victoria would benefit from at school, and support for us as parents, so more useful than a simple "she has autism" letter.

My wife attended a meeting with the school last week, which is a regular meeting between the SENCO, Victoria's teacher and an external "special needs" teacher that has been monitoring Victoria's progress in school for some time. When told of the diagnosis the school stated that they didn't need to do anything in order to secure additional funding and there is nothing they could do with more money that they weren't already doing! This surprised us a little as I thought schools were crying out for money, and we know Victoria is getting a lot of extra attention/one to one tuition etc. They did of course say that this may change in the future but until then we just carry on, albeit they now have some better direction to take now they have a diagnosis.

It's a strange feeling at the moment. I feel like I should be doing something with the information (diagnosis) we now have, but short of learning as much as we can about the condition there's little practically we feel we can do. I'm sure that will change as things sink in properly and we begin to understand the "known unknowns" as it were.

What a good thread. OP, best of luck for you and your family - it sounds like you are very switched on and working hard to get the best results so I am sure you will all do great!

I was diagnosed with autism two or three years ago. I am a classic "good with numbers, bad with people" type . . . but (in the workplace at least) I have learned the rules. People in an office environment tend to react predictably to any given stimuli and their range of behaviour is quite constrained. I do pretty well there and enjoy it. I find life outside work a lot more difficult, especially my children who seem to be highly unpredictable in their responses and therefore immensely frustrating! (probably most NT parents say the same though...)

The great thing about your early diagnosis is that, if your daughter begins to struggle at school as her peers become more emotionally complex, you will be able to support and guide her and explain what their behaviours mean. This should make the whole thing a lot less mystifying and frustrating for her! Good luck with it all, and thank you for sharing.

I've become one of them. One of those people that go to support groups. You know, those poor sods that can't look after themselves and need a group of strangers to give them an emotional pat on the back...

That's what I thought as I drove to the Father's Support Group, an offshoot of a wonderful charity called We Are Beams based in the next village to me. But I don't care... I spent nearly four hours just shooting the breeze with 9 or 10 like minded men. Fathers and grandfathers of children and young adults with autism.

I didn't come out of there with any answers but to be honest I didn't go in with any questions (other than "what am I doing?!"). But I did come out knowing that there are a group of blokes local to me going through the things I am and probably will go through and that helps a lot. As much as threads like this can give reassurance, it's not a fraction of what you feel speaking face to face with normal people over a lemonade and a Club biscuit (I didn't even know they existed still!).

And it does seem that there are a lot of resources in my area that we can and will make use of, and the 2 guys that run this group seem pretty well connected if we ever need a door opened to a expert's office, which is good to know.

Interestingly, the 2 guys that run this group are not "experts" in this field. They don't profess to be. One is a father and the other a grandfather to autistic children/young adults and they have experience, an open door and the time to listen.

If anyone reads this and thinks such groups are not for them all I would say is give it a go and you might be pleasantly surprised. If nothing else, we had 4 hours away from the stresses of home and quite a few laughs along the way. I will certainly be going back in March at the next meeting.

Being many years old I had grown up with myself and didn’t see myself as odd or different. I knew I was happy in my own company, even preferred it; didn’t really have friends; struggled a bit in social situations; unless people talked directly I would struggle to understand what they really meant; got a few funny reviews at work saying I didn’t seem to understand people well; liked numbers/data/order & structure; have a great ability to retain information. I thought nothing of it & just kept doing my thing.

I then met my wife. She is forthright and says what she thinks. She is also very spontaneous and changes arrangements on the fly. She started making a fuss about how she felt I was getting unreasonably stressed when she would do this & thought it was odd. She’d ask “What’s the problem, why are you acting like this?” I’d also have mini-meltdowns over the most innocuous things, examples being going to a car park & she starts telling me where to park, when I’m already looking for somewhere. It was understandably becoming a problem between us. She also felt I was rude with people because as she saw it I would ignore them or not make polite conversation

She was always very interested in things of the mind & traits associated with particular characters. She would do these online indicators. So I did them also. When I did the one on autism, I showed very strong traits. She didn’t believe me. At that point I started reading a lot on the subject. I realized that actually I do in fact have a level of autism. When you hold a mirror up to yourself & truly look at things you see it.

I need structure, I need routine. As soon as something happens to break that it’s stressful. I need to have a level of control of a situation but I don’t want to be controlling. When I lose control of a situation it’s stressful. Multiple simultaneous inputs be they noise, words, or whatever are stressful. I need time to process those inputs. I am simply unable to do small talk, I can talk forever about things of substance. I have little real interest in asking people questions about themselves. Things interest me, people don’t on a personal level. I can be very direct, lacking tact sometimes. Some say I lack humor.

When I spoke to me wife about this I don’t think she really believed me, but she now knows that there are certain times when she just has to bite her lip. She realises there are things she can do to avoid the worst traits.

Back in the summer we met a guy who is a psychiatrist. My wife joked that I thought I was autistic. He said highly unlikely knowing what he knew about me on a non-clinical level. Over the course of the next hour or so I chatted with him one to one. His conclusion was that on the face of it… yes I was autistic. The thing that struck him the most was that I appeared to have almost zero empathy. So I now feel with confidence that I have a level of autism.

What does that mean for me? Well ultimately not a lot. I’m for the most part Ok with me. I’ve always known what sort of situation stress me & try to manage or avoid them. I can now articulate to my wife better how she can help not introduce the stress factors. It’s difficult but I have to really consciously try to engage with people, where previously I maybe didn’t really notice that I was disengaged. Work wise I guess even without knowing, I’ve always recognized the things I have to really work at as they don’t come naturally. In the social sphere it’s a work in progress, but it’s just as important as it can impact hard on my wife.

I’m sure compared to many who will add to this thread my case may not be extreme, but it can still have impacts on your life you may not be aware of or put down to other things. In many ways I think I’m actually glad I never found out about it until later in life, as if I’d know at an early age I’m sure my approach to many thing would have been different to my detriment.

There is so much in earlier posts I can 100% relate to but this really could have been written by me.

I am one of those "theme park" families you refer to.

My daughter has Tuberous Sclerosis, and we were allowed a 'green card' for Euro Disney last August (she was 3).

It felt weird entering the exit (oo-er) to rides and having shorter queues, almost like a VIP, but I knew people were looking and thinking "What's wrong with them?".

It was a constant reminder of my daughter's condition and a future of unknowns.

I know one thing, without the 'green card' the holiday would have been massively soured by her behaviour (10 minute queues were tough, couldn't imagine 40+)...the amount of times she would agree to go on a ride, and then have a meltdown and a change of mind was ridiculous. She's so stubborn, and I guess as mentioned a lot in this thread "set of mind".