to ask what your DC with aspergers is like?

[livvielunch]

I'm pretty convinced my nine year old has aspergers and today I feel thoroughly suffocated. She never stops touching or following me, she talks at me constantly, doesn't listen to or care about anyone but herself. Does anyone else have a DC with aspergers who could offer some words of wisdom on how to cope on tougher days?

My 8 year old has aspergers and dyspraxia.

She is very clingy to me and to her best friend at school. It does feel suffocating. Sometimes she talks none stop, it's always a very one sided conversation about something she wants to talk about. Often about her favourite subjects. She often gets cross if you interrupt her. She doesn't do listening very well. But she also doesn't seem to mind if you don't pay attention to her when she's talking - I can read a book, watch TV, even walk out of the room and she keeps on talking regardless - so I often tune out and just make occasional mm-hmm noises and she's happy. This is my main way of coping with the incessant talking.

Other times though she's very quiet and it's difficult to get her to say anything. this is usually when she's overwhelmed. She will just put her head down and refuse to engage with anyone.

She can appear very self centred but that's because she finds it difficult to understand and accept that other people have different points of view or want different things. She does care about other people, but doesn't always know how to show it.

She doesn't really do physical contact with anyone apart from me, even DH isn't allowed to hug her.

The bit I struggle with most is the emotional side of it.
She will cry over the smallest thing. The slightest knock or fall, the most innocuous comment, a slight change of plan, something not being the way she expected it to be.
She's scared of: most food, getting washed or brushing her hair, being on her own, busy places, the dark, new places, creepy crawlies, dogs, mud, going to sleep, teachers, going to school, people she doesn't know.
It's EXHAUSTING managing her emotions on a daily basis.

DS has ASD, he was diagnosed at 7 and is nearly 17.

He has never been the talkative monologue type and doesn't speak much. He was always quite affectionate with me when he was younger although not so much now. He can self-occupy and would happily sit for hours on his own (playing with toys when younger, now it is all computer games and YouTube). He was very challenging in primary school and used to attack the teacher, throw chairs etc and was excluded numerous times.

He got a statement when he was 10 and goes to a special school for ASD now. Is on meds for anxiety, sleep and bed wetting. He was studying for GCSEs but failed all of them last year, now he is doing a vocational course but was excluded before Christmas so not sure how things will go. I do fear for his future and I don't know if he will ever live independently.

I have ASD as well (NHS diagnosis) and it's had a knock on effect on my mental health, I've been on ADs for years and attempted suicide numerous times. I struggle with housework to the extent that SS have become involved, and I've never had a job.

Lemony thank you so much for sharing, and thanks to the other posters too.

Can I ask those with a diagnosis if you disclosed your ASD to uni/employers etc? Do they put anything in place to support you? Do you feel that has made a difference?

I honestly don't know what to do regarding my dd. She is very uncooperative regarding school work and I do fear that she won't be able to live independently. Hearing from posters what helped them is very helpful, thank you.

I was diagnosed with Asperger's last year, as an adult.

A lot of what lemony says rings true. The anxiety is probably the worst part for me, I'm on medication which keeps the worst of it at bay. And I also have to be in control as much as possible. I do have meltdowns but they're infrequent at the moment (thanks to meds). I have a few sensory 'things', certain sounds and textures set my teeth on edge and make me very agitated, while certain kinds of touch are very soothing to me. Apparently as a baby/toddler I would only sleep in my cot if my back was being firmly patted, the moment my mum stopped I woke. Even now that clams me, but my mum is the only one who can do it right!

I didn't have a diagnosis back when I was at school/uni but I wish I did because I got into big trouble after a public meltdown at uni!

I have told my employer and some colleagues. Nothing formal has been put in place, but the colleague I work with day to day is a good fit for me anyway, she gives clear instructions, writes everything down, that sort of thing. The colleague I was with before was horrible to me initially, after I disclosed her whole attitude changed, so that was worthwhile. I do know that people have complained about me in the past, things that are directly related to ASD, so it's reassuring that my diagnosis is on my personal file and so any complaints in the future won't result in any action being taken against me.

clams calms

My 9 year old DS1 has aspergers syndrome. He likes routine, lists and diaries/calendars. He gets anxious when plans change. If I get any kind of messy stuff out for my toddlers to play with he wants to join in and does so with great enthusiasm (usually with no clothes on). He is brilliant at lego and builds models aimed at 16+ year olds without help. He gets anxious when people he doesn't know are in the house eg builders, plumbers etc or when he sees people out of context like seeing his teacher in Tesco.

I've got Aspergers and need to feel in control of my life.

I can't have been an easy child to live with but parents didn't help by moaning about me rather than showing me how to do things differently, telling me off for being different etc

Aspie too, diagnosed at 46. Three Aspie children two of whom occasionally post on here. Ds 2 in has third year at uni, likes quiet, is quiet. Also has physical Tourette's. Dd1 a chatterbox but improving at nineteen! Dd2 prefers her own company, both girls going to uni this year. Do is Aspie, there are days I hide in my office, he even talks to the television and the dogs!

Can I ask the posters who were diagnosed themselves as adults, how did you get to be diagnosed? I think I'm probably AS but am nervous about seeing the GP about this as I see him about other things all the time and this is another thing....

I was assessed privately by a specialist a few weeks ago.

It's often difficult to get the NHS to assess you because services vary from area to area. The ones in my area are terrible and extremely poor, even for children and adolescents.

It was suggested when my son was going through diagnosis that I may want to follow the route! I had guessed anyway.

I was under the GP for mental health (depression and anxiety) anyway, so brought it up at one of my check ups. I prepared a list with a couple of key points, ways in which I met the 3 areas of the triad of impairments.

The first time I went, the GP agreed that I was probably AS but said there was no point in referring me as there's no support for people diagnosed as adults. I went back a couple of months later, when I was having a really bad time, and broke down in tears and said I didn't care about support but needed to know for my own sake. He agreed to refer me but I moved before the referral went through, my new GP was much more on the ball though and got it sorted, I saw a psychiatrist a few weeks later.

Knowing has indeed made a huge difference to my life!

I got my adult diagnosis through a psychiatrist who was assessing me for therapy for something completely different. I do have a long history of MH issues - it's extremely common to have comorbid symptoms with ASD. I was referred directly to a specialist for assessment, all on the NHS, and the turnaround didn't take long. I think because they had so much history it was fairly straight forward to make the diagnosis.

I have ASD, I was diagnosed when I was in Y2 (with Aspergers) and I'm now at uni. I'm very glad I was diagnosed young. I know a couple of people diagnosed at an older age, one recently who was referred by her GP. It's taken a good few months but at least there's a team quite nearby.

I know I was a challenging child in some ways, less so in others. But primary school, especially years 2,3,4 were very difficult for me, the school staff and my parents obviously. I was clever, and could and did do well academically when I was concentrating and comfortable in the room, but there was a point where the school I think were sending me home for the rest of the day very frequently because they couldn't manage me in school any more. I was never formally excluded and so I got through a few very bad years and everything improved dramatically by Year 6 (I had a fantastic 1:1). Secondary school went very well on the whole. So I guess from my personal experience, I would say you can't necessarily predict the future based on a period of time when you're 7 and 8 or so, and support can make a massive difference. Some people always have very significant issues and others find coping mechanisms as they mature and might seem to change a great deal despite being fundamentally the same person.

To answer above question, I do have DSA here at uni, and I have mentoring and equipment funded through it, and also a great personal tutor, so I've found some very helpful support. I don't tell everybody, or even most people, but I think it's usually a good idea to tell some people, and a good idea to declare it on your UCAS form. I don't find it easy to do but have found it worth it. What I do struggle with (in terms of work) is organisation, work anxiety and especially emails and phone calls. I cause problems for myself because I panic over writing an email so put it off. I still haven't replied to one email I receieved in November, I say 'I'll do it tomorrow' over and over, but I still haven't got past the mental block and anxiety yet. I've been planning to do it this week, all week, but I can't even pretend to myself that it will get done tomorrow now. I do have quite bad anxiety.

Very happy to talk to anybody further by PM

I know an astonishing number of people who have self diagnosed with ASD as adults. Whether or not they're all correct I have no idea but they are almost exclusively women in their 30s-50s - so exactly the age group and gender that would have missed out on recognition as children I suppose.

It blows my mind how medical professionals are able to work out who has ASD and who doesn't.

Our SENCO mentioned ASD in passing to me the other day with reference to my just turned 13 year old but I can't see any likelihood of that personally. She has some mental health issues (very anxious and recently been diagnosed with anorexia) and has a tendency to isolate herself at times but she is passionate about performing, extremely perceptive and empathetic and reads people like a book.

Whereas I, who nobody has ever suggested would be anything other than totally NT, cannot tell when somebody is lying and cannot empathise at all - I have taught myself to imagine what someone is feeling and act accordingly but I cannot feel it myself.

And then there's the fact that none of the diagnosed ASD children at our school really resemble each other at all.
Eg

• child 1 is academically super bright, is a keen reader and creative writer, is very helpful and trustworthy and is great company. But cannot tolerate teasing or negative comments, can't be reasoned with and hysterical screaming 'tantrums' (meltdowns seems like the wrong phrase because it's more controlled - door slamming, crying, stamping and barricading as oppose to locked into own world screaming iyswim. Has a lot of friends but they're a bit frightened of her them and only really like them in a group
• child 2 is very limited academically, hates all classroom based lessons, will argue black is white and lying is their default. They rarely show anger or unhappiness at all and I've never seen Them cry. They find social interaction very difficult and usually play alone. But they enjoy spending time with adults and is very chatty with us.
• child 3 comes across as totally NT. You would never guess ASD in a million years. Except that what seems like naughtiness and rudeness is actually a lack of understanding about appropriate behaviour and social cues. If their behaviour is explained they become embarrassed. They also like to be different from expectations (gender role stuff, for eg).
• child 4 is one of the most popular and sociable children in their year group. They are very confident and actually rather unkind to children who struggle socially. They are completely incapable of telling a lie, even to be polite. They cannot do drama, creative writing etc as they don't see the point - they say things like they are and nothing else.

I'm in awe of the doctor that could look at all these children and know what was wrong and how to help.

Interestingly, I love performing , am very empathetic and can read people, although I have some impairment with the last one. these are personality traits, not NT traits. What I can't do is 'connect' socially, so can't make friends, which is a source of continued depression, then there's the anxiety, insomnia and sensory stuff to contend with.

lemony could you please tell me more about how the dyspraxia has affected you?

I'm a keen performer too. There has been quite a lot of coverage of autistic child and adult performers which shows it's not an unusual trait amongst those with ASD (e.g. Autism's Got Talent on TV a few years ago, Daryl Hannah and Susan Boyle).

I think I do lack empathy though, and sometimes when observing or reading reactions from people (often on MN) I simply cannot understand why they feel strongly about something. But I've learned to mask that and socially appear to be more in tune with others, because otherwise I'd get ostracised as a psychopath.

Ds is almost 19, diagnosed at 9 after many years of specialist to-ing and fro-ing.

He's blisteringly clever, has an incredible memory for facts and his IQ and reading age was always way above average at school. He hugs me every day, and hugs his Grandparents when he sees them. He does household chores as soon as he's asked. He's kind, generous and funny. I always know where he is and he's never been in any trouble in or out of school.

He's also chronically disorganised, has no sense of time or priorities and forgets all the boring details of daily living. His bedroom is a pit, but he's obsessional about body hygiene and showers as often as I let him. He only has friends that share his hobbies (mostly computer based). He cringes at the sight of sex scenes or naked bodies and says he never plans to have a girlfriend or children. He hates talking to strangers, or even people outwith our immediate family or friends circle. He hates going to visit the doctors surgery, and when he does I have to talk for him. I worry that he will struggle to ever achieve full independence.

I absolutely adore him and I wouldn't change him for the world.

Yankee candle someone at your LA is fibbing to you

DD is in the final stage of having her EHCP put together, educated at home via Interhigh which the LA are funding already, she hasn't been near a bricks and mortar school for a year due to her condition