Not Autisitic enough

hi recombinantsocks

I agree with you, and she should have had counselling or CBT but the GP referred her back to the mental health team twice to try to get them to see her again but they wouldn't. She was so depressed and anxious and has GCSEs coming up so low dose medication was the only thing to try as a last resort. Every day I give her a 'pep talk' before she reluctantly heads off to school or I walk to school with her to keep her spirits up.

I am hoping having a diagnosis will be of more help when she goes to college as the college has a learning suport team.

I find this site has some useful information especially the input from members such as yourself.  Thank you.

and I'd say to Al too, if there are any other mental issues, then keep on at your GP to try and get help such as counselling too.

all the best to you.

JennyRobin said:

She also suffers from depression, anxiety and social phobia, but the mental health practitioner told her it was because of her condition and to use breathing and relaxation strategies, but she finds it  hard to do so when she is stresssed.  The GP has prescribed anti-depression medication which has helped a bit.

Autism isn't a mental illness so the mental health team discharged her, and said they didn't need to see her again, once she was diagnosed at the end of last year.  

Autism isn't a mental illness but people with autism do suffer mental issues. They should only have discharged he if they have resolved her mental health issues - depression and anxiety. It is inappropriate, in my opinion, to give a person drugs for condition if there is an underlying cause that indicates that CBT therapy would be more appropriate. Your daughter sounds unwell and should be treated by the appropriate people (the mental health team) rather than having drugs doled out by a GP.

There is an issue with autism diagnosis in that a diagnosis leads to a categorisation as disabled with all the appropriate protection that brings for some people but other people who are less affected cannot get a diagnosis even though that diagnosis may help them get better treatment. Diagnosis in many conditions is a black and white issue but autism introduces a spectrum of affect that is problematic for the health and legal systems that struggle to cope with the idea that someone can be somewhat affected without having it classed as a disability.

hi Al

I can understand your frustration, but am glad to hear you have learnt to cope in life.

My teenage daughter was diagnosed as being on the Autistic Spectrum with Aspergers Syndrome and Hypersensitivities last year. I got a long report and a list of recommendations. But because she is doing ok at school, she doesn't get any real support.  The only help she has is to be allowed to go in to school when the other children have gone in, so she can avoid crowds and noise, and a 'time out' card for if classes get too noisy.  

She also suffers from depression, anxiety and social phobia, but the mental health practitioner told her it was because of her condition and to use breathing and relaxation strategies, but she finds it  hard to do so when she is stresssed.  The GP has prescribed anti-depression medication which has helped a bit.

Autism isn't a mental illness so the mental health team discharged her, and said they didn't need to see her again, once she was diagnosed at the end of last year.  

I believe some areas of the country have more support than others but there isn't anything where we are, and because she is doing ok educationally it doesn't look like she would be able to get a Educational Health Care Plan which would give her a benefit.  So she has no support or benefit.

She doesn't go out socially at all, not even to the local shops, and prefers to be on her own.

I tell her that she has brilliant artistic skills and creative abilities, and has fantastic attention to detail, and I encourage her in the things she is good at.  I support her as best as I can and I think the best thing is to make her focus on her best talents.

Al,    I'd say focus on how well you must have learnt to be able to cope with life, and you are lucky to be able to have a job and a good social life, and use what you have learnt to focus on helping your son with the knowledge that you have, so that he will know how to cope with life too.  

You sound like a very insightful person and go easy on yourself too.

All the best to you.

Jen

Hi Al

I was offered a referral by a GP and turned it down, as after reading a lot about it and watching that programme with Simon Baron-cohen, I came to the conclusion that it was highly like that I would be deemed "not Autistic enough"  for a diagnosis. 

I understand your frustration. We like black and white definitions - either we're on the autism spectrum or we're not. Being refused a formal diagnosis can make some people feel they're being treated as if they're a liar, or a fake.  But they're not. some people with autism can lie on occasion but in a situation where it's important to get a correct and true result, I don't believe anyone on the spectrum would lie.

The problem is that the NHS are looking for a disability, but although some people with autism have a disability too, I don't see autism itself as being disabled - it's better described as being "differently abled" and brings abilities and Strengths as well as difficulties.

Keep reading and posting questions and sharing your experiences. I believe it's the best way to help ourselves.

All the best 

Thanks for the feedback guys.

yeah my situation is not straight forward either and similar to both of you really, however with this in mind there was still no offer of an actual diagnosis.

I take your point in what benefit that would be right now given I have adjusted my life in many ways, have a job, good social life, but the thing is that it doesn't change the way you are or think as life ticks its way forward. I struggle with clashes in communication, an very literal with people who upset me and can't stand dishonest people who don't follow the basic rules in life. I think these things probably wouldn't bother someone who hasn't Autism too much, but they do with me and then that has an adverse knock on effect with your mental well being and those around you.

i think for me the assessment doesn't go far enough by just asking questions, as the assessment should come from different angles of practical, problem solving and various angles that would provide a wider view of the ongoing difficulties faced by each person.

again, how someone can be deemed with Austistic traits, but then have the door closed on them with an ADOS test is a truly sad reflection of this country really!

I'll find out if I'm "officially" autistic next week. I've got by reasonably well for decades without having the slightest awareness that I may be different. But with hindsight I can see that things have been slowly going wrong for a very long time, and there are a lot of things I could have done differently if I'd known what I think I know now. 10 years ago, when I was just regarded as being depressed, a diagnosis could have prevented me from doing things that have got my life into a mess I haven't been able to get out of. Maybe a self-diagnosis at that stage would have been enough, and I could have prevented the problems arising, but I wasted a lot of time being treated for the wrong problem, and got misled into thinking I was cured of whatever had been troubling me all my life.

I'd much rather have a clear diagnosis, and be told that there's no support available. At least I would know for sure what I have to deal with on my own. If things get worse in the future, or I run into trouble, a piece of paper with an official diagnosis could help to protect me. It could prevent me being given wrong treatment, demonstrate to anyone who questions or criticses my quirky ways that there's a genuine reason for it, and protect me from the heavy hand of bureaucracy or the law if I get into trouble. It could also save the country money in the future, as I've lost a lot of the financial security I would have had, due to what I now think are autism related bad decisions I've made.

My life has been on hold for 17 months so far, while I wait for a diagnosis to confirm if I'm on the right track. I dare not take the drastic action I may need to take to get out of the situation I'm in, until I get confirmation that what I've worked out for myself is right. I'm not expecting much, if any, support to come out of it, but if something is offered it could make a big difference. All I want is expert confirmation, or to be told it's not what I think it is, before I act. I'm getting too old and tired to get things wrong again.

Hi Al,

A diagnosis only needs to  be made if you have been made ill or are in need of some support that is warranted by your condition. This point was explained by Simon Baron Cohen in a recent Horizon programme on autism. If you are managing in life and are not suffering from depression, anxiety or unemployment etc then there are no additional services that you can benefit from. If you have been made mentally ill as a consequence of autism then a diagnosis is essential, if you cannot get employment because of the condition then a diagnosis is essential but otherwise it is just information and the NHS does not start treating people because they are unusual.

You probably are on the spectrum and will probably benefit from treating yourself in the light of this insight. There are lots of books to read and this forum is also useful and nobody here on this forum discriminates because of the official diagnosis status that someone has. I have had a diagnosis for the last two years and have not really benefited from a great deal of treatment or any specific services - I get help when I am struggling or having a crisis - but there is no great resource or facility that you are being denied access to as far as I can see.

Autism affects people differently, some people are profoundly affected and cannot work at all and cannot leave the house due to the trauma of life, others have a life that is probably affected by it but are managing reasonably well, others have enough luck, good upbringing, common sense to simply be happily eccentric and different. My life has mainly been in the latter section but modern life has moved the goalposts and I have struggled to the point of having a fragmented and fractious work life that has resulted in depression and anxiety. I, unfortunately, needed a diagnosis but I can see that others who are more fortunate could have similar autistic traits but have followed a different path in life and as a result have no need of formal assistance.

A diagnosis is also a two edged sword. It brings some benefits but it also confirms that one is sufficiently incapable, of the things that other people manage, to warrant a disabled label. Be careful of what you wish for perhaps?

Hi, I hear your frustration, I have been diagnosed last year. I had 2 interviews beforehand, and while it was clear I had autistic traits, they also considered whether it would be beneficial for me to get the diagnosis. I had hoped it would open up other lines of support, but that has not happened. In some ways it has blocked support, as one of the mental health teams in my region has refused to work with me because my needs are too complex (anxiety, depression, ocd). 

As they have told you would have got a diagnosis as a child, seems like age discrimination to me. Personally I would complain to the nhs trust (that's what I am doing but for different reasons). Support for autistic adults is very minimal, focus is on supporting children and the parents of those children.

Again they mention you have adapted through learnt behaviour, that is just a given for a late diagnosis. Again something I am fighting for, complaining to the nhs trust. Whilst I have learned coping mechanism, I still struggle and am just surviving, not living. I feel they take the opinion that, you have done well supporting yourself, you can just continue doing that. This does really worry me, in to how many poor souls have not made it through, I had had 2 suicide attempts in the past, and have felt very close to another attempt recently.

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