Help and advise needed in West Sussex

Hi Chelleypop,

   I don't want to overwhelm you with literature, but if she does get a diagnosis, 'Living well on the Spectrum' By Valerie Gaus maybe of some help.

The book is designed as a work-book to help individuals identify their strengths and weaknesss, but with an emphasis on using those strengths. This book has proved really helpful for those wanting to manage their lives more proactivily and promotes identifying weakness as a positive tool to reduce anxiety, by being able to identify triggers and learning ones own limits.

I must stress again, Sarah Hendrickx does not diagnose, but does use standard assessment to calclate probability. She is well respected and her experience (Over 300) goes well beyond Tony Attwoods reccommendations for assessment (100) of those with ASD.

Her findings do not replace a clinical diagnosis, but in my view, (and it is only that.) having such an assessment can allow targeted support to be implimented way sooner than the pace the NHS move at. Even if it has to be personally driven.

By that I mean, that she can start to access some support from therapists, mentors or societies which can advise her rather than wait for the NHS and loose valuable intervention time. For me, at such a low ebb, this was invaluable!

Ref: stateofindependance comment. 'I am rubbish at maths, but this looks like quite a good business strategy to me!'

I cannot see things in quite the same light.

When those like Chelleypop's daughter reach rock bottom; as she has described, their is nothing remotely 'business strategy like' about it!

Mental health care and indeed assessment for those in need of ASD support is often poor at best, with many suffering prolonged periods of inadequate care and significant anxiety due to delays in diagnosis and even mis-diagnosis. Their is no doubt these failures cost lives and when a concerned parent tells a forum her daughter is at rock bottom, she needs to be heard, offered support and her daughters well-being considered!

My late brother; also an OCD sufferer, bless him, don't get the right support in time for him and it cost him his life.

Having been through the process myself, i know only too well what a difference timely support can make.

It's true that for some a formal diagnosis is necessary to access certain rights under the equality act etc, but for others, (and this is true of many late diagnosed adults) the knowledge alone is enough to carry them through the balance of their lives with a good family and friend network of understanding and support.

In my view assessment needs to be a tool for which a plan can be formulated to assist and support a persons needs, not a business strategy to dispel potential ridicule. Fogive me, but your comment sounds somewhat calculated.

Indeed, assessment of Chelleypop's daughter may rule out ASD, but rulling things in is not the only focus, ruling things out is equally valuable if you are looking for the correct support.

The most important step however, is what you do with that information.

Chelleypop I wish you all the best.

Just ask if we can be of any more help.

Coogybear

Thanks coogybear, you have been a geat help. I can imagine a diagnosis could also help my daughter. She has already labelled herself as odd, different, an outsider, so a formal diagnosis that enables her to identify with a group of people who struggle with some of the things she struggles with, may prove a relief. At the moment she feels very much alone. Recognising she drinks to feel normal has been a big first step I think. After I have read the books (I've ordered three now, two particularly geared toward women with aspergers and one connected to alcohol use), if I think they might resonate with her I will pass them on and take it from there. 

Stateofindependence thanks for your reply. I hope your NHS diagnosis does not take too long. I have read that AA does not tend to work for people with aspergers (as a rule). I wonder if Alan carrs method (the man famous for writing books on quitting smoking and drinking) would be better as they are pure logic, aimed at making you never want to drink or smoke again. no will power involved. 

Sarah Hendrickx has an interesting website, and I can relate to a lot of what she says. However I do take issue with the fact she refuses to do assessments on anyone who has previously been given a negative diagnosis by a "professional". 

I'm on the waiting list for an NHS diagnosis, and when I read that, started wondering whether I ought to pay for her assessment first, just in case the NHS dismiss me as yet another neurotic neurotypical having a mid-life crisis, and I wanted a second opinion. I am rubbish at maths, but this looks like quite a good business strategy to me! 

Re alcohol - this has been a "constant companion" from age 15, at varying levels. Went to AA years ago, and the thing that struck me most was that every speaker said they had always felt they were different from everyone else. AA did not suit me - in fact their philosophy that you have some genetic flaw that is going to make you crave alcohol for the rest of your life is probably the worst kind of brainwashing I can think of. But I'm sure there is a link!

Chelleypop,

  I can only speak from my own personal experience, but diagnosis was a very positive step for me and has helped me come to terms with some pretty traumatic life experiences. 

My own life nearly ended some years back following an incorrect accusation by the DWP. My severe reaction to the predicament I found myself in (It was the straw to break the donkeys back.) was what led to my diagnosis. Indeed I hit rock bottom before i got help.

Personally, having the diagnosis has allowed me to reflect on my lifes journey and to identify some well trodden behavioral paths, Including a reliance on Alcohol to help me cope. Only now; armed with the knowledge I have, do I feel able to address this.

It doesn't mean to say that days in the future won't be tough or that I won't be low again as my live is filled with anxiety, but I'm hoping that the second half of my life is different with this new found knowledge. We all have to start from somewhere and rulling out posibilities is almost as important as rulling them in.

I would say acceptance is a very important part of understanding the condition. Having someone who understands you as a person is equally as important. An independant evaluation by someone who understands fully and who is able to guide you positively through the process, tends to inflect a positive view on the outcome in my experience, but you must do what feels right for your daughter.

I've had to negociate the process alone (I have no reletives left.) but you sound very supportive of your daughter which is a great asset. Finding support in a timely manner was very important for me (The waiting lists were too much.) Please look at her assessment as a holistic process if she decides to go through with it. She may benefit from some therapy also.

Do feel free to ask on the forum if you have any questions. Their are often people on here only too pleased to help.

Coogybear

Thanks Coogybear, that was very helpful. I think if she's open to it, an informal assessment could be a good starting point. I ordered the book about aspergers and drinking to cope. I will read it and see if it resonates witg things my daughter has said. Part of me thinks she would be relieved to put a name to her 'oddness' as she calls it, but I could be way of the mark. It's just so hard to know. She is at a very low ebb right now and I don't want to make things worse for her. At the same time, if she has an underlying condition that triggers her depression/anxiety and leads to her wanting to drink so much, but that condition is never diagnosed, I can't see how that will be good either. I wish kids big and small came with an instruction manual. I just don't know what to do for the best. 

Can I just say, the waiting list is extremely long for adult assessment, so do be prepared for that. (Years often) In the interim, you may wish to look at alternative assessments if you wish to impliment some support for your daughter now. Sarah Hendrix; mentioned above, does have her own centre, which I believe is based in West Sussex. It's worth mentioning that she is not a qualified proffessional, but her work is well respected.

(Please note that what we offer is not a formal, clinical diagnosis of an Autism Spectrum Condition. Our assessment is simply that: an assessment of the likely presence of Asperger syndrome which follows a defined diagnostic process. Due to Sarah’s lack of clinical qualifications this is not a definitive diagnosis. Only a clinical psychologist or psychiatrist can do this.)

www.asperger-training.com/.../

Additionally, you don't say whether your daughter is open to the concept that she may have ASD. Is it something you have spoken to her about?

Longman has suggested some excellent books and I do urge you to research all you can. 

Ref. Doctor, It may help if someone is able to attend with your daughter. I was fobbed off when I asked for an assessment as I lacked the assertiveness to be insistant. Had I have had someone with me to help, then things may not have been so drawn out for me to be assessed.

Good Luck

Coogybear

Great help everyone. thank you. 

She could complete an on line questionnaire which would indicate if she is on the autistic spectrum.  I can't remember its name but doing a search on this site shd find it.  Also she cd take the results, if they indicated autism, to her GP.  I think the average GP could make any number of suggestions as to why your daughter is feeling as she is so I think it's important to try out the questionnaire before seeing the GP.  Also it might be worth checking out if any of the GPs in the practice have an interest in autism (probably not) or mental health (possibly).  Some areas of the country have Community mental health + learning disability nhs teams, but I don't think you can self-refer.  Hope things improve 

The assessment centre is based on Worthing, Swandean, I think. Your daughter would need to ask for a GP referral to the adult ASC assessment service.

This is a tricky one and I hope you get more responses than just my clumsy interpretations.

I can see obvious difficulties with the GP - GPs have strange ideas about autism though the situation is gradually improving - you might still get antiquated ideas about women "not getting" autism, or having got so far and having a child by a relationship implied that wouldn't have been possible with autism etc etc.

So you do need to arm yourself with facts and evidence.  But another issue I venture is being a young mother and having reared a child to age 3 is enough for depression. Does she still have the father supporting her? You don't say whether she is married, partnered or single.

There is a book "Asperger Syndrome and Alcohol - Drinking to Cope?" by Matthew Tinsley and Sarah Hendrickx (Jessica Kingsley Publishers 2008 ISBN 978 1 84310 609 8). This is still a controversial subject, and I'm not sure about the availability of this book. It doesn't seem to have caught on with the professionals.

It quotes Gilman Ostrander in "Alcoholism: The Facts" by Donald W Goodwin, 2000 edition - that alcoholism is a condition for individualists and loners, affects those who get a sense early in their lives that they are alone in the world, prevents them getting emotional release through others, leads to finding this through alcohol.

This notion seems to underpin the deductions in Tinsley & Hendrickx. Alcohol may be acting as a tranquillizer for people who find social groups uncomfortable - used to manage anxiety with social situations - drinking to feel more competent socially - then making a link with that difficulty in autism and aspergers as a "social anxiety disorder" - and several studies have indicated that those with social anxiety disorders have an above average chance of developing alcoholism. The thinking behind this book is weakly argued.

Also p92, around 66 percent of alcohol dependent adults entering treatment show evidence of anxiety and/or depression. Clearly not all these people have AS - but it adds weight to their argument! .... apparently.

The trouble is there isn't much data on this. And there's a lot of debate. But it is perceived that autism has a connection with alcoholism.

But you say you fear she is abusing alcohol - her justification for doing so might fit Tinsley & Hendrickx hypothesis - the trouble is convincing health professionals, who seem to be in denial that there is such a connection.

I think you need to do some more research on this, if you feel able to spend the time, and access what books are in the local library. You have to make your own judgement of poorly supported published arguments and what you perceive is happening to your daughter. That's tricky.

Has anyone else got any insight on this?