Mihaela

Hello, BW, and welcome to the forum. From what you say about your son not realising what he says is wrong, it suggests that his 'theory of mind' is impaired - which sounds as though he could have Asperger's. Has he (and have you), checked all the traits,for there are many other signs to look for. The fact that he has lots of friends is unusual though, for most of us find it difficult to keep many friends and become stressed in groups of people. I know most children are diagnosed for AS by paediatricians, but really if possible they should all see psychiatrists who specialise in autism - especially older children. Social skills often improve naturally over time, as they did with me, but generally we're never very comfortable over interacting with our neurotypical peers. I don't see this as a great problem though, for we have many special characteristics and talents that make up for it. If he is diagnosed with AS, he should try to find a local support group and would be made very welcome.

I was just the same at work, but I had no idea that I had autism. I think it all depends so much on what kind of person your boss is. Does he listen? Does he know about your problems at work? If so, is anything being done about them? If he underestimates your abilities, can you see opportunities for improving the work as a whole that would make him think more of you? If he's open to new ideas he should see you as an asset. If you feel you can sell yourself in this way at the same time as telling him about your autism, it should be in both your interests, and under the Autism Act he should make 'reasonable adjustments' to take your autism into account.

Is he a specialist in autism? He should realise that staring causes us stress - unless he was doing it to test your reaction.

I'm sorry to hear this, but all bullying is wrong and damaging, so your elder son did the right thing. Unfortunately we live in a bullying culture where despite anti-bullying rhetoric and policies they are are largely ignored. It's rife in this country and is far less of a problem in Europe (a recent Save the Children survey placed Britain at 14th out of 15 countries for child happiness, with Romania having the happiest children - no surprise for me there). This silly idea of 'manning up' is so very English, and should be consigned to history where it belongs! As for your son's anxiety, I would have suggested the very coping strategies he's already using, but I'd add having beauty around me. Anything beautiful and calming - walking in quiet countryside, music, poetry, collecting, art, etc.. I use all these and they help a lot. I hope things soon start improving for you all.

Welcome back, Gold! I've no time to reply at the moment, but your life isn't ruined. It's only ruined if you believe it to be ruined. No-one is making you believe that, but 'they' would like you to believe it. Life is what you make of it. Aspies tend to have hidden strength, and are good at bouncing back.

There seems to be no set procedure for these diagnoses, and they vary such a lot depending on who we get. Mine involved a diagnostic interview with a psychiatrist, followed by a phone call to the only relative who knew me as a child (and even then not very well). The next stage was an ADOS test, which I didn't do too well at due to the stress of travelling there. Lastly a short final meeting with him and a psychologist to discuss the future and support needs. There were no forms of any kind to fill in.

Very interesting. I did the same with my own family and worked out that my mother very likely had HF AS, and so did her mother - who was often described as 'difficult' and had some strange habits. So did my brother (pretty obvious) but my father didn't. I've no doubt at all that several other relatives, all on my mother's side of the family have also inherited it. She wasn't the social type, had very few friends and often didn't keep them. She rarely went out and was obsessive about the house, cleanliness, etc. She collected obsessively too. From what she told me about her childhood, and her own mother, it all now seems to fit in with AS. Both were very sensitive to bright sunlight and all three of us couldn't cope without sunglasses. There's much more too. I had a rather strange and complex relationship with my parents, but they certainly loved me and one another. To answer your question, only you can know whether you should tell them, but I know that I would have told mine, had I known at the time. They always recognised that I was 'different' and 'fragile' and would have liked to know the reason - for we didn't always get on. It would have explained such a lot. The fact that they never knew is the biggest regret in my life. Are they the type who'd understand? Would they be relieved to know? Would it help them to know? If so, then you should think about telling them - when you feel the time is right. Don't leave it too late.

Very true, Ann. After being told that there were no adult Asperger diagnosis arrangements in my area, I still got mine in about three months. So you may not need to wait too long.

I was in a similar position to you, Confused. I only had a cousin who remembered me as a child, and even then only vaguely. A phone-call with my specialist was all it took, and I got the diagnosis, so I wouldn't worry too much. Morally, they can't penalise people who, through no fault of their own, have no living relatives.

It's good to hear that you gf is backing you over this. That must be a great help. Good luck for the 19th!

Thanks, Georgia. I was catching up on your earlier posts, and I identify with so much that you said about how autism affected you. My own personal obsession with death is not so much my own mortality (although that's part of it), but death in general, and the mystery of existence. I can't cope with death well at all; it scares me. I know this is due to my AS - and it's just one of umpteen extreme sensitivities with which I'm forced to share my life - sensory, emotional and aesthetic. Potential illnesses can cause anxiety too - if I allow myself to think about such things. Luckily I can suppress such thoughts and I try to avoid reading about medical matters in general. Like you, I used to have massive mood swings - and only at home, but now that I only live with my cats, they've disappeared. (By the way, I have a love-hate relationship with pianos -my favourite musical instruments. I love the sound, whether accompanied or not - from Chopin to Svetla Ilieva - but my mild dyspraxia is enough to prevent me ever improving my playing. That's one of the negatives of being on the spectrum, especially seeing that music plays a big role in my life. Pianocat can probably play better than me, but she's a very modest feline and quite shy about performing when I'm around!). x

Very true. Apart from a few loose friends who know me pretty well, all I need for regular company is my cats. I couldn't live with another human being for very long. They'd interfere with my routine and interests and stress would increase. Both me and my 'best' friend have zero sexual needs which makes life a lot easier in that way. We have our own kind of relationships and can have a lot of fun without feeling threatened by others expecting from us what we just can't give. Well several meetings later and apparently any support will only be temporary. Its as if my Asperger's just vanishes with their timer runs out. As well as the teams in place to help are doing a good job of helping me NOT trust them. This is what I fear too. When I need more support than ever, I find I'm not getting it, due to staff being on holiday! So I'm having to wait, and force myself to temporarily forget all my worries about coping in this mad world. All autism-related support should be guaranteed as lifelong. What do they expect when they withdraw it? I still feel that we should all support one another as much as possible, for I'd sooner trust another Aspie (more honest, more loyal, unpaid) than a neurotypical paid worker. This is one of many reasons why active user-led support groups are so necessary - everywhere.

I used to have 'blank days' every once in a while, but not any more. Days are never long enough for me. Although... I do suffer from occasional acedia - that's if 'suffer' is the right word, for it's a weird bittersweet experience, which can even inspire me.

And no, there is no 'normal'. My definition for 'normal' is - BORING. So very true, Ms Georgia Piano!

Welcome to the forum. It didn't take me all that long to get a diagnosis (a late one, like you) - only about three months.

To all who have wondered whether I'm still alive, I have no internet access at present so my appearances here will be erratic. I'm writing this in advance and need a friend's help to post on here. Georgia - I find your comments most interesting. I 'suffer' from a late diagnosis of what I'd call a textbook case of 'female-type Asperger syndrome'. (I have virtually all the recognised traits, some of them in extreme). I say 'suffer' because, had I received an early diagnosis (preferably during childhood), life would have been so much easier. Instead, I spent decades trying hard to feign neurotypicality - not always very successfully. Faking it may come naturally over time, but it takes its toll, and I've had to create umpteen coping strategies in order to stay reasonably sane. I'd say that the key difference between FTAS and the classic 'male type' is our ability to act a role. Like you, I was diagnosed with depression and a possible personality disorder (schizotypal-avoidant). I can now see just how they reached that conclusion, and how wrong they were! This was some years before FTAS had been 'discovered', and as you say, there must be large numbers of us out there who have no idea why we are 'different', let alone diagnosed. My life has never been easy, and this is entirely due to how the NT world treats me, and how I react to it. Psychiatry, let alone wider society, still has a long way to go, before it fully recognises FTAS. I'm not happy about the term 'female-type' nor about the Asperger's connection, for it doesn't properly describe the condition, although it clearly lies on the autistic spectrum. Maybe we should call it 'high-empathy autism'. (I also dislike the high-functioning label, for in many ways we don't function 'highly'; we function differently and may have many difficulties, especially seeing that getting support isn't easy - compared with the automatic support received by those at the 'low-functioning' end of the spectrum. If we don't have families to support us, then our lives can break apart, as mine has been doing ever since I lost my parents. I agree with you that a lot more should be done. We need a dedicated support network and campaigning arm that specialises in our type of autism. Its very subtlety and the way we respond to it, makes us 'blend in' too easily - that's until we get noticed, in a crisis, for example, by which time it's often too late. This doesn't mean that we don't suffer unnoticed even while we're 'blending in'. By the way, this describes me perfectly: "My life, from a child until now has been an existence of angst, frustration, confusion, anxiety, unexplained meltdowns, poor relationships with family and friends, OCD, health obsessions, phobia of illness and hospitals, being misunderstood, depression, addiction, self harm, anger, inability to function for no explained reason, over-functioning some days to the point of hyperactivity." As for gender identity (confusion, fluidity and dysphoria), this is significantly more common in people on the autistic spectrum, and so is physical androgyny. I suspect that this is due to our autism affecting gender-determining genes which 'wire our brains' differently twice over. We're also several times more likely to be asexual than neurotypical people (only around 1%). Exodus. You make some excellent comments, but I think this gets to the crux of the matter: "...we need a definition of what Autism actually means, not these loose and rather unhinged presumptions that suggest that all Autists cannot feel emotion or recognise facial cues". So very true. Mainstream psychiatry is still way behind when it comes to officially recognising such things as FTAS, PDA, links between giftedness and autism, etc. We have a few pioneers to thank for recognising that things aren't as clear-cut as so many of 'experts' claim. We too have an important role in educating the 'experts', the public and one another. "Does anyone know if there IS already any help out there?" As far as I know there's nothing apart from generalised autism/Asperger's groups - which isn't good enough, for even within those groups there's often a misunderstanding of our type of autism, but at least they're more receptive. I'd be very interested in being involved in setting up a support/awareness website... that's as long as someone else handles the technical side.

An important thread. I have a lot to say about asexuality (and sexuality in general) but it will have to wait for a while.

No, it's not a silly idea at all. I'd really enjoy that.

Atypical gender identities are a lot more common in people on the autistic spectrum than in neurotypical people. So also are asexuality, hypersexuality and object sexuality. As you say, gender identity and sexuality are unconnected, but they are both largely genetically determined. The common factor is autism. It genetically predisposes us so that we are more likely to be 'different' in these ways - as well as in many other ways.

LOL, I did the same! Then a few months later I found another one with different pictures and I still did the same!

I only asked because I have a lot of experience with two councils and know people who could advise you for one council's area. Like you I'm in no state to make any kind of big decisions, and I don't think I will ever be. My parents always helped me over that kind of thing. My support worker was here today helping me with decisions. Next week she's taking me to various places to start getting things sorted out for me, such as a photo for a bus pass, advice over money, etc. If he has notes as you say, they'll be useful if you do end up having a support worker.

They've probably never thought of it, and simply associated Sonic with children, and thought no further - even though it would be commercially in their favour.

My own mental health has deteriorated ever since I lost my mother in 2012, and I too spend the days walking around - or glued to this computer. I understand your predicament very well, for I've been involved with a housing-related support organisation and heard many similar distressing stories. I live alone (well, that's not counting my 3 cats!), have no work, and I'm not yet claiming any benefits, and I need the practical support that I had from my parents. It was a battle getting a support worker, but at last I now have one. Problem is my local council consistently don't seem to care. Exactly! They don't care. They see us as a nuisance. So much for the Equalities Act and the Autism Act! I hear this from others and experience it myself. They say time and time again, that because I am living at home, they won't do anything. But they would, wouldn't they? It gets them off the hook and saves them money, but you are entitled to a home of your own. Supposing your parents didn't want you there - the council would have to find you somewhere. Which council is it that's messing you about? You could do with finding an advocte with experience of autism to speak for you. If you have a housing-related support group or disability rights group in your area, they'd be able to help you.

In other words, Sally, they've dumped her in a PRU without mentioning that it's unsuitable, nor that she'd be a lot happier in an ASD-specific school - nor the option of being taught at home. So much for LEA's working in the child's best interests!

That's a very long wait. I think I was lucky, for I got my diagnosis about 3 months after being referred. It involved a diagnostic interview, and the ADOS test - made up of a few simple tasks. It didn't properly work for me for I don't have classic Asperger's, but have the 'female type' and I was in a panicky state due to the stress of travelling there (traffic and noise). I saw the psychiatrist three times.