what's the point in diagnosing AS at 18?

[Pedalpusher]

my female cousin has just been diagnosed with Aspergers at 18. We don't see them that often but do see we them at extended family events. its really confused me because
a) she doesn't seem remotely different from any other teenager and never really has
b)why would it take 18 years for them to get a dx?
c)what's the point in a formal dx at this stage anyway as she is now too old for any extra support at school etc.
my mum thinks it is all a load of nonsense and that there is nothing really wrong with her. I don't feel this way. i know girls are different and perhaps better at masking symptoms but i'm still puzzled by it and would appreciate anybody throwing any light on this. We are facing a possible neurological dx for ds aged 3 so am really wrapped up in all this stuff at the moment. Can't talk to my aunt really.
TIA

Just because your niece seems Ok to you in a family setting does not mean that she copes well in a school environment.My ds has major probelms coping with school, yet in otgher home based environements people find it difficult to believe he has any real problems.

If your niece wants to go to college or university she would probably be allowed certain concessions in exams and in the way she is taught based on the diagnosis. She may have been provided with what she needed in terms of support at school but her disability will not just go away now that she is 18 years old and she may need support in further education.

It may also be important to your niece to have a label for her so that she can have an explanation for any problems that are not "she is just difficult"

It may help her mental health immeasurably, if she can now understand why she has always felt different, not included, lonely, weird, etc etc etc. It could be a huge relief to know that she is part of a large group of people who are multi-talented and accepted in society, or at least, understood by a large proportion of society. It's not always great, IMO, but Amberlight might disagree with me!

You don't just get a dx so that you get extra support at school!

It can easily take 18 years to get a dx. There are people on this board who have been fighting for a dx for about that long.

Now that your cousin has a dx she can choose what to do with that info. She might want to join support groups. To research it. To try diff therapies. To change her diet. Anything.

Hope your mum is more supportive of you if you ever need it......

Pedalpusher

Obviously the earlier you are diagnosed with a developmental problem the better able you are at explaining the differences you have to others. Those of us who have a high IQ can be very good at developing strategies to conceal the true nature of our invisible disabilities, and appear to only have the odd bad day like most others. But eventually our abilities to conceal or problems fails and exposes the true nature of our differences. All teenagers what to appear like their peers to blend in.

My own disability Auditory Processing Disorder (APD) can cause me to appear Aspergerish when i am talking to others, and I have to understand why I can appear like that, and be able to explain the reasons for this. Your cousin will need to explain her issues to her close friends, especially boy friends, to employers, etc. Most of these types of issues tend to have a genetic origin, and many parents can go into denial rather than explore any family history of this types of issues.

There is much more international research available now about a wide range of Invisible Disabilities and the researchers are identifying many new subtypes or different categories of some of the more well known conditions.

It may well help her deal with depression, anxiety, phobias, self harm & suicide - all of which young adults & teenagers with ASD are at greater risk of.

I know a 24 year old woman who has just been diagnosed - she was 'fine' all through school (if you discount the self harming), incredibly bright - scholarships, Oxford etc - managed reasonably okay with the support of her family, just a bit shy & highly strung. All fell apart when she went to university - several suicide attempts, severe agorophobia (the only time she leaves the house is at night to drive around on her own for hours at a time), food phobias, anorexia. She has never worked & relies totally on her parents for support.

None of the support/drugs/therapies offered to her over the last 6 years have been even remotely helpful or appropriate since they have failed to address the underlying impairments which make life more difficult. Hopefully the ASD specific mental health services she has access to now (privately) will be more effective but there is an enormous amount of damage to undo.

Or she might just be living it up on her DLA

point of DX at 18?

twofold
1)if extra support needed at Uni, or possibly would be requesting reasonable adjustment from employers under DDA.

2)understanding why you struggle social/feel different to other/are a bully magnet/cannot get the joke EVER - delete as appropriate - can make a huge difference to someones self esteem, if they realise there are millions of people in the world struggling with similar, rather than feeling inadequate and flawed.

why would it take 18 years for a DX?

about to make a huge, sweeping generalisation, but girls on the spectrum are v good indeed at internalising their problems (so tend not to be aggressive at school), and good at trying and quietly blending in. To be blunt - if a child is doing OK at school and behaving OK at school, school is not going to be pushing for outside help as much as if they have to deal with a more demanding child

I have to totally agree with TotalChaos im speaking from personal experience if its okay at school they couldnt give a fig as soon as its really getting a problem (for them) and our Dcs are getting bigger and harder to handle low and behold things start happening albeit still slow unless it affects them of course see them move if its something they want

I fully agree with TotalChaos.

I'm 34 and having gone though the DX route for my son (11) i have pretty much self diagnosed myself haha... im honestly concidering getting a formal diagnosis for no other reason than because it will explain to me even if not to anyone else why i am the way i am. The thought of actually having someone turn around and say you have AS or ASD is hugely comforting and i think it will bring alot of closure.

I suffered terribly one and off though my life with depression, mood swings and general frustration. I've been though every therapy/pill going and it's only my new found (the last few weeks) understanding of ASD that has made me think ... wow maybe this is IT maybe this is why i often feel like the world just doens't understand me or make any sence.

I also agree girls are very good at hiding it, no-one even knew i was struggling untill i was found in lying in my own vomit about 30 minutes away from being dead. It totally shook my parents world as they had no-idea i was struggling. I got good grades at school, kept out of trouble and very much seemed "ok" to the outside world.

Seeming OK and being OK are very different things.

DS will be 17 in July and even though he has shown signs of ASD since he was a toddler he was diagnosed as having severe ADHD and complex LD's despite ourselves, school and EP arguing with psychiatrist over the diagnosis and the fact that he attends a school for ASD kids.

He is now under the adult team and is currently being reassessed, we have recently found out that a lot of young people are leaving the children's team with no diagnosis because they don't want to label them.

In the family he is accepted for who he is take him out and he finds it extremely hard to cope. It matters to us as we can't actually tell him what is wrong with him.

A friend of mine's son was recently diagnosed at age 20 and has already discovered one massive (to him!) practical benefit! Better police attitudes - they now see him as an innocent to help rather than a potential villan!

He's 6 foot 7 and had been stopped, searched and then thrown in police cells a couple of times after OTHER local youths had caused trouble of various sorts. Sadly having grown up with him, less than nice (alright feral little yobbos) had learned his odd ways make him an easy target under stress. I think his height also makes certain people feel threatened though he's as gentle as anything. His manner with the police had been interpreted as rude, so to teach him a lesson they'd given him a hard time, which had greatly distressed both himself and his poor Mum

On getting an autism awareness card from the NAS, following diagnosis he was able to take it out of his pocket and show it to the police when stopped. MASSIVE difference in police attitude! Totally kind to the point of walking him to the correct bus stop and waiting till he caught it, rather than another night in cells! He's now learned flashing this card when he gets "stuck" in central london somewhere means the police will help him gently and kindly. At 20 he wants to take his girlfriend on dates, go dancing on a Friday night, go to museums in town alone etc. The card gives him so much reassurance.

College has also gone from being an extension of the nightmare school was but only studying a subject he enjoyed to a source of enjoyment, as again his peers and tutors get he's not being rude when he seems a little abrupt in his replies. Tutors give him time to formulate his spoken responses in class and again are kinder to him generally rather than irritated by him. People explain when he's confused by social stuff rather than leave him to flounder - he's learnng fast! He now gets a little DLA which he has saved to spend on some sensory related therapy which have also helped him.

The overall result has been a massive lowring of his anxiety levels, a girlfriend, a social life and increased skills. Mostly though he's happier and more independent of his family than he was before. Who doesn't want that for their child - whatever age?

wow, great post bochead.
Reminds me of my younger brother who's 18. Could be easily described as 'a bit of an idiot'. But when he's able to say he has severe dyslexia, it does help with officials + college staff. Also police, as he gotten himself into silly situations where he's taken the wrap for 'mates' with police and such.
Yeah, I think diagnosis in adulthood can help alot.

Getting a diagnosis as an adult can be hugely beneficial. I was 21 when I was first diagnosed with dyspraxia, I'd left Uni so wasn't getting support for that. I'd masked my problems so well. Teachers had noticed some of the individual problems and helped me to cope, e.g. organising myself etc. I'm very organised now as I've adapted. They were always a bit puzzled as to why I always got a grade lower than expected, I was seen as bright but 'lazy' which teachers frequently called me. Now I know I'm NOT lazy, I know why I struggle with so many things, but also why I excel in other things.

It's helped my relationship, DP knows I'm not lazy, he knows I genuinely forget things and now he knows to believe me when I say something wrong (I have strong ASD overlap) and am genuinely bewildered that I've annoyed him/been offensive. It's helped with parents and friends too - they know I'm not being 'difficult' or 'quirky'. I was often seen as being weird for the sake of being weird, we now know it's not true. Plus I can 'see' SN now more and more in others, one of DP's mates has some odd behaviours and like me takes language very literally, for both of us 'did you sleep with them?' means - 'did you sleep in the same bed?' not 'did you have sex?' - DP said it's improved his friendship as he can see now that his friend may well be on the Spectrum too and he accepts his eccentricities better.

It's enabled me to receive extra help searching for work via Remploy and having the official diagnosis means I can explain any difficulties to employers and ask for reasonable adjustments such as written instructions, being allowed to make to do lists etc. I persuaded my GP to send me to be assessed because I was struggling to get a graduate job - I just couldn't pass the maths tests and was being screened out at the 2nd stage with every job. Having a diagnosis meant I was able to request extra time etc for the tests.

But most of all I am finally at peace with who I am, I spent years knowing that something was wrong. I've found old diary entries from my childhood where I've said I was sure I had an undiagnosed medical condition, I just didn't know what. Now I know that I'm not lazy, or stupid, or hopeless - I know now that I'm bad at PE not through lack of effort but due to poor co-ordination, I know why my maths is so abysmal and I know now not to care so much about what people think - I can look back on grades I used to be ashamed of and know how well I did to get them and to get my degree despite having an undiagnosed learning difficulty. I've stopped comparing myself to my NT peers with much better grades and skills as the comparison is invalid - they simply were not blessed with my brain

What TotalChaos said. I got my diagnosis at 31 and please do not take that to mean that I happily swanned through life before that with no problems. My parents knew I was different. It was evident I was having difficulty with social interaction, with routines, rituals, organisation, a whole range of problems. But I was quiet and withdrawn (read easy for the teachers to ignore) and my mum at least did not want me assessed (my dad did, my mum persuaded him otyherwise). I have had a sheltered structured life which meant I did not think about my inability to maintain friendships, my poor self help skills etc. Well, I was aware that I had them, but it never occurred to me that there might be a reason for them. I was unusual in that I married the second person I dated, the first lasting only a few weeks and the man I married has always known I am different, but accepted me as who I am. And to be blunt I do not think I would have managed to get through university without him, in practical terms. Doesn't mean we don't have issues relating to my AS, but he has never said I needed to see a psychiatrist. It probably helps that he is borderline on the spectrum as well, though I doubt he would get a diagnosis.

borderslass can I pm you? I'm not a stalker honestly

Oh and I know I'm pointing out the obvious, but AS doesn't disappear when you leave school. In fact, in many ways the need for a diagnosis is greater, because often people expect you to be independant and cope with jobs, relationships etc. Small changes to jobs can leave me feeling stressed, anxious, irritable and when that happens I shut down, am unable to process instructions for example. I'll give you an example. I work voluntarily once a week for three hours in a museum. I work either on my own, or with another person, handling artefacts, recording what they are and taking photos of them. One person recording and one photographing, if there are two of us. I have been doing that since January. Now, a couple of times there has been a change, I had to cut up material once and another time I had to staple leaflets together. But those jobs were at the same table I usually work at and I was on my own, which helped.
However, last week when I went in there was initial talk of going elsewhere to help with packing. I started to feel panicky. I did not know about the packing. I did not know where the packing was to occur. In my mind I envisioned box after box tumbling down on top of me. This was not what I expected. Then a reprieve came, we would catalogue the items in a box instead, as I was used to doing. The box was sorted. Someone told us we could start with the packing. I stood there trying to make sense of what was essentially a simple procedure, but partly through worry and partly through the fact that I process instructions far more easily if they are written down than if I am hearing them (even simple ones) meant I was struggling. Again a reprieve came and a box was brought down to catalogue, but I am still anxious that next time I volunteer there will be other changes.

Bullet - I have the same problems with instructions e.g. with cooking, if DP and I are cooking a meal we've done loads of times before and DP suggests a small change like 'shall we put some real tomatoes in the chilli' I shut down, it flusters me because I've learned how to cook the chilli step by step and can't cope with that being changed. I can cope if I think 'oh I might try adding tomatoes with the kidney beans' but if someone else imposes a change my brain just can't process it. I also get panicky with instructions as I tend to forget them and I worry I'll do something wrong and get in to trouble, it's hard to explain but it's like my brain just goes blank and I don't know what to do.

Same with people cooking the same dish differently, I tried cooking pasta bolognese with Mum once. She puts oil in the pasta saucepan with salt, I use salt and stir it to prevent sticking. I had to leave the room when she insisted on adding oil, I just couldn't cope with it. Dad's the same, if I stay with my parents and cook something he has to leave the room if I do things too differently to him (we've realised he possibly has AS, it would explain his life to date, he's high functioning but does act oddly sometimes and say things without realising their impact amongst other things)

That's all really interesting and helpful thanks. I suppose with hindsight I can see she was unusually quiet, but never thought anything of it as she is very clever and able to perform musical instruments etc. very well for the family. I guess there was always a lot going on under the surface though.

I glad to say she is now at Uni and all set to do a year abroad !

Adding my thoughts to the splendid ones above - I didn't get diagnosed until I was in my 40s, and when they look at any large group of adults they're finding massive numbers of undiagnosed adults everywhere - certainly 1 in 50 men for example, and 1 in 64/1 in 100 generally. There simply were no diagnoses available before 1994 anyway.

As others have said, women tend to be hugely clever at disguising difficulties as shyness and end up being diagnosed as having eating disorders/obsessive-compulsive symptoms/depression/schizophrenia/any other useless label that doesn't actually fit but the docs don't know about autism. Even today, many GPs say they are totally unaware of the symptoms of autism and haven't a clue what 90% of us 'look' like (er, the same as everyone else on the surface! We dont have two heads or orange stripes...).

Autism is social clumsiness because our brains can't see and process information on people and their body language etc properly...and an extreme need to be able to predict what's about to happen so we have time to cope with it. Plus a good number of us have sensory issues that accompany it.

All of this makes life massively harder than it is for others, and many of us end up with mental health issues on top of it because of the endless strain and worry of trying to cope alone without support.

For me, the diagnosis gave me peace of mind that it's not just me failing to cope...and access to some help and support (not enough, but it's a start). Likewise I can show my autism card to people if I get stuck, and they don't have to think I'm just being rude.

I have nothing to add really, but just wanted to say I agree with lots of what has benn said about girls with AS, I have 2 Dd's who I suspect have AS. One is in the process of being assessed so far this has taken 2 years and the other is 22 and unlikely to get a dx unless she decides in years to come to go down that road.

I am glad for your cousin and her parents who have obviously been living with many issues for a very long time. I hope she achieves everything that she wants to achieve.

Yes no problem cornsilk.

my husband got his HFA dx aged 35... it went a long way to explain various troubles at many points along his life, and helped him come to terms with his children a lot easier... in fact - his rare flashes of lnsight into the mind of an autistic are quite useful!