Hoffmann Foundation for Autism
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I want an ASD diagnosis but nobody will help?

I am a 22 year old female and I've always known I was different, 6 months ago I came across aspergers and saw I matched most if not all the criteria I've ever researched about it. I've spoken to my family and they agree with it and my Mum and Grandparents have mentioned traits I had even as a toddler right through up to what I'm still struggling with now. It just fits me perfectly and explains all of my difficulties in a nutshell.

I have been diagnosed with anxiety and depression however ASD has never even been mentioned to me by anybody, I came across it completely by myself. I've learned too that anxiety/depression are often related to ASD and it's possible I was misdiagnosed or the ASD was completely overlooked/missed.

I looked on the NHS website to find out what I should do and it says to go to my GP, which I did today, however the doctor was so dismissive of me and didn't want to give my request to be tested for ASD the time of day. I came out of there so angry and upset, he said there is no where in Lincolnshire that tests adults for it, only children, and basically told me to get lost, he didn't want to know or help at all.

I've had many issues with this practise about my mental health problems too, they don't understand me at all and this is why I want this diagnosis, at least then I would get the help I obviously need, but I feel so lost, I have no idea what to do and how to get professionals to listen to me. :(

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Hello CavyCrackers

Have a look at this link; it may help. Also you could contact the NAS to ask their advice. Is there more than one GP at your local practice? Personally I would make another appointment, with another GP and get a second opinion. Take your mum along with you to offer support/evidence and help you get your point across. Parental evidence is a big part of the diagnostic process.

Sorry I don't have much experience of adult diagnosis but it sounds like you're getting a raw deal. My son was diagnosed at age 6 but we were lucky enough to have the whole thing go fairly smoothly.

autism.org.uk/about/diagnos...

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Hi Nozmo, thank you for replying! My Mum was with me today and tried to back me up but he was adamant there was nothing he could do. The NHS website says I just need a referral to a psychiatrist and I know there are many in Lincolnshire, but he was still unwilling to even do that. He said he will 'look into it' for me but I could just tell from his attitude that he will not, he just said that to get me out the door faster.

There are 3 main GP's at my practise and none of them are good, all of them are very 'against' anything mental illness and they seem even worse with ASD. There is one locum doctor there that was very nice and got me a referral to rheumatology when none of the other doctors would, I may ask for another app with him specifically...

I just want to know if what he said is true, there is really no where and no one in lincolnshire that can diagnose ASD? That seems really odd to me.

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Seems odd to me too; a bit too simplistic. I would try the locum and also contact the NAS, they'll be able to tell you exactly what to do and they're a good organisation to have on your side.

Mental health provision seems to be a lottery at the minute. The best advice I could give would be to explore as many routes as possible. Even though our son's diagnosis was quite pain-free we found that afterwards we were basically left on our own. We had to ask questions and pursue government departments to get help. It certainly wasn't made readily available.

Hope it all works out for you. Don't let them get you down!!

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I will definitely take your advice thank you so much for restoring a bit of hope that I might succeed :)

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We had exactly that problem. We contacted some of the local child-oriented groups, explained the problem and asked if they had any suggestions as to where to go. We eventually found a clinical psychologist who worked with those up to 25 years of age. We engaged her privately and got a diagnosis. The downside was the cost £1000+. Good luck.

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Wow, £1000, I'd never be able to afford it. :(

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Yes I can understand that. We scraped it together to help our 22 year old son. Our GP was happy to do a referral but the waiting list was 1 year+. Good luck in your quest

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I've heard that if you get a private diagnosis you're not entitled to NHS help, I wondered if you knew whether this was true or not?

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No. The problem is that an NHS diagnosis is related to the help agencies as a matter of course. If you go private then you have to track them down (difficult) and inform them yourself.

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Hi

I know it is exspensive but maybe consider having a private consultantation with a physiatrist that knows about autism and maybe a report from a physiatrist will make your GP take notice. Not the full assessment for autism. It would be just one assessment with a physiatrist and then the full assessment will be were your GP referr you 2. It refuse it if it in black and white. He is not providing you duty of care.

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Check to see if your local authority does adult assessments. Our authority has only recently started to provide them. The first time my husband went to his GP about an assessment, he said that they don't do them. Two years later, he was happy to put my husband on the list. You could ring the NAS and see if they know if there is an NHS service in your part of the country.

autism.org.uk/services/help...

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Hi, I've suspected strongly that I have Asperger's for around 8 years and after much research was convinced of it. I made an appointment with my GP and sent a letter to him beforehand with a detailed account of what it is like inside my life, who then suggested that I was "shy" and had OCD and also said that if I had Aspergers it would have been picked up at school. As I was 57 yrs old, that would be extremely unlikely!

I was pretty crushed and left it for 3 yrs before going again with my partner to see a different GP, she read the letter that I had sent my own GP and immediately referred me to the Hampshire Autism Centre. She mentioned that there was no provision for assessing adults when I first approached my GP but her attitude and reaction to my letter was markedly different to my own GP who basically brushed it aside.

I'm obviously pleased to be taken seriously but also rather sad that I've struggled so very much through out my life. I now await my appointment at the Autism Centre and hopefully some help to cope with the future.

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Where in the UK do you live? I was diagnosed by a group called Axia ASD in Cheshire. They do private self referrals and take NHS referrals too (which is the route I had, it’s where GPs in my bit of Manchester refer to). There was a 2-3 month wait

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I was diagnosed last year at Axia in Chester with asd at 60 yrs old. I knew I had it for around 10 years but after being fobbed off by two gp,s tried a third and got a referral. After a positive diagnosis I have to say nothing much has changed in my life apart from family and friends viewing me more kindly and patiently. I know referral's to adults was withdrawn in east cheshire in october 2017.

Kind Thoughts and Best Wishes

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Good for you in persisting to get a diagnosis! Its harder when you're older to motivate yourself to get the diagnosis, must admit you're brave. At least you have a name to your problem, now people recognise you're not just being "awkward" or attention-seeking, as some make me feel. I am about to book an appointment to see my GP for an assessment, not looking forward to it as I am able to put on a "mask" with people so that I always appear like everyone else...and so he will be surprised...but I have felt the same ever since I weas very young, I could see I was different. I'm 72 now, but nobody seems to understand, so if I get a diagnosis, though I doubt I'll get any help, I at least will have a name to put and a reason to be the way I have been all my life! Relief lol. I hope they do referrals in my area!

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