Help needed, please <3

Laina Eartharcher,

Hi everyone!  I know I just published a post, so I apologize for another post in rapid succession, but something has come up.

In the comments section of my last post, a lovely commenter from the UK mentioned that they’re having trouble getting an official diagnosis.  I know that some of us on both sides of the pond (I’m in the US) have had trouble getting a proper formal diagnosis as adults.  I understand that both the UK NHS and the private system here in the US have their issues.  ❤

I’m humbly asking any and all of my lovelies in the UK who’ve been successful at getting an official diagnosis through NHS to sound off in the comments section with any recommendations y’all might have, whether it’s the name of a specific professional or clinic, a tip for progressing through the system or expediting the process, or anything else you can think of.

If you have information but would rather share it privately, or if you’d like to help but remain anonymous, please feel free to contact me through my Contact page in the menu of this blog and I’ll be your go-between if you like!  

I’d really love to see this lovely person get the support they need.  😀

Thank y’all so much!  ❤

❤

❤

❤

Published by Laina Eartharcher

Feet on the ground, eyes toward the sky.

61 Comments

      1. Anyone wanting more detailed info please reply and I’ll send you via email … my experience is UK only … for my son we were to referred to CAMHS via school. You can however self refer. Things were better at school before the diagnosis however. It was manageable. After that we were in and out of 4 state primary schools due to lack of resources (not necessarily although sometimes willing and ignorance) on the school’s part. Getting a statement was to be honest our easiest part. The real struggle was getting the local authority/council to understand the best place for our son was in a privately funded mon-fri boarding school. This took years of solicitors and getting really mad ! Prepare for a struggle; a lot of this wore out our marriage (although not solely of course) and we later divorced; but, our son ended up in the best place for him and he has thrived in the 4 years since (he’s now doing GCSE’s a few years early at aged 12/13). My best advice is just never give up.

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  2. I had been seeing my GP about depression and whilst working through that I decided I needed an assessment for autism. He referred me through to mental health and I saw a psychiatrist who made the initial assessment who then send me to the local support unit for further tests. Still attending that unit for sign-posting and information. I live in Scotland though and I think there is less pressure on the system up here. The key for me was a supportive and understanding GP so don’t be afraid to change to a different one if that isn’t the case. Good luck.

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  4. I just asked my GP (general practitioner doctor) who was able to refer me to our local psyc team, took six months. I don’t think GP’s are allowed to refuse a request for an assessment. Process was easy and straightforward in comparison to child services. If in Scotland Scottish Autism offer an assessment service costing in the region of £3000 in England the Lorna Wing Centre offers private diagnosis also costing in the region of £5000.

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  5. I just received my late diagnosis at the start of this year (I’m in the UK). The area (South West) I’m in allows me to bypass the GP and do a self referral so that’s what I did. I waited around a year for the appointment and it took place over two two hour sessions. The self referral part was done online so I wrote a huge essay of facts about me and things I struggled with, and heard about a week or two later that I fitted the criteria for assessment and was on the waiting list.
    I think it helps to take your time with what you want to say and writing it down is a perfectly valid way of getting information across. During the assessment process also, i was encouraged to write down any further thoughts I had because the assessment itself was an odd experience … it wasn’t bad, just odd trying to get across information when experience is subjective and obviously how I am is my normality so I did tend to miss a lot of the points of what she was asking me or where she was going with certain questions. Being able to email her in between the sessions was hugely helpful and it also filled in a lot of blanks for her too. It’s a really short period of time to relay a lifetimes worth of information. I also took in print outs of autism related articles I’d found online and highlighted what in them was applicable to me.
    After the two sessions she took the information to the autism team (they all meet once a week to go over cases) and it was decided that yes I did fit the criteria and she emailed me the report (I had the option to go in but chose email instead as it was a long journey) to make sure it was factual and she had noted everything correctly. I then received my official diagnosis. Hope this is of some help.

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  6. I’m also in south west of uk. I was told by my Dr that I wouldn’t benefit from trying to get a diagnosis in our area. I think she meant it would be a tortuous process. I was very vulnerable at the time and had a complete breakdown. Sometime later my husband took me for a private diagnosis up in the Midlands.

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    1. That was part of the reason I bypassed my GP – I’m registered with him but I don’t go to the doctors so didn’t have any kind of history / relationship there with him. It’s pretty bad that your Dr said you wouldn’t benefit; surely that’s your decision not theirs? The support afterwards is non existent so she could have meant that, but I wasn’t even thinking about afterwards, I just wanted an official diagnosis. I’m sorry you went through that x

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  8. I didn’t go through the NHS for various reasons, but I am reading more and more that it’s becoming increasingly difficult to get a referral for assessment as an adult if your GP thinks you are coping well enough (from the outside of course). Eeven for children now, with recent cut backs its getting harder. It does seem like the CCGs are trying to dissuade anything other than the most severe cases, money saving exercise *eyeroll*. If they do diagnose you, they are obliged then to pay for assistance etc. so they are trying not to in the first place. Many GPs are still dismissive especially of female ASD cases. Waiting times can be a year or so, even up for a couple of years and involves lots of fighting to get the assessment. Its partly because of this that I went to a private clinic, I didn’t need the stress.

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      1. Sorry its not a positive, but that’s the sorry state of the NHS at the moment, and it’s only getting worse. We are in serious danger of losing it as things stand.

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          1. Our Tory government is gradually breaking it up and privatising more and more of it, whilst claiming it’s for the best. If we aren’t careful we will have an American style health system of “show me the money”. It’s a very very very scary thought. A recent TV show here had an old man telling of what it was like before the NHS existed and what happened to his disabled sister at that time when his parents couldn’t cope (she was shoved into a poor house asylum, where she died and was then thrown into a paupers pit).

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  9. I’m in the SE of the UK. In my region self-referral isn’t possible. If you want a NHS diagnosis you have to be referred by your GP. When I was initially researching the procedure to get a diagnosis as an adult I found the National Autistic Society (NAS) website useful. I saw two GP’s at my local practice – neither had the knowledge to know what to do with me. After nearly a year of trying to persuade them to refer me somewhere they passed me onto the Time to Talk section of the local Mental Health Services for a diagnosis of depression. The nurse I spoke during our initial telephone consultation determined very quickly that I was not depressed and agreed that Aspergers was much more likely. She then referred me to a clinical psychologist within the Learning Disabilities department. I had to fill out a detailed questionnaire and attend a consultation with a close relative who had known me since childhood. The whole process took over 18 months. Unfortunately getting a diagnosis as an adult is not easy and requires a lot of persistence. Even with a diagnosis we are not entitled to any support unless we pay privately for it.

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  10. I report voluntarily to the UN on the welfare crisis impacting Britain’s sick and disabled, so I’ve tweeted this and your previous blog post to my followers. I’ve subscribed to your blog and will commence tweeting it on a regular basis. I wish you all the best!

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    1. Thank you bunches! 🤗🤗. I’ve heard of so many people having a tough time with getting a diagnosis, and my heart goes out to them. An “empath” thing, I guess. 💙💙. It just seemed like the right thing to do 😀💜💚

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      1. It seems that services are geared to children, and sort of drop off after adulthood. It’s sad. If anything, people need more help as adults.

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        1. Soooo true 👏🏼👏🏼👏🏼. If there’s a nail in front of you, it’s completely submerged in the wood by now 😉💓. I’m really lucky to have found my husband, whom I find that I lean on quite a bit, for lots of tasks most people would find mundane and simple. Without him, I’d either be living with my parents (yikes!) or a friendly roommate who understands. I shudder to think, actually, because I get really freaked out by Unknowns 💞. It’s sad indeed 💔🌺

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  12. I think a diagnosis for Asperger’s, like with various conditions & invisible illnesses, can be incredibly challenging. I think it’s a great idea to ask for any tips to help the person that left that comment, it’s a lovely thing to do.
    I’m afraid I don’t really have any amazingly helpful advice, but I would say to persevere… Change doctors if you’re not happy, take someone with you to appointments, seek support or an advocate such as through PALS (https://www.nhs.uk/chq/pages/1082.aspx?CategoryID=68) if you’re not being heard or treated fairly and adequately. The main thing is to keep trying, keep seeing whoever you can and being as assertive as possible in trying to get the answers and the help needed.xx

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  13. I was referred for assessment via a psychiatrist at A & E. I was assessed at Lanc UK and diagnosed within 6 months of being referred. I never saw my own GP as it was a case of being in the right place at the right time for me so I can’t really help RE going through GP. However, my advice for assessment is to take as much information with you as you possibly can. I went in with four sheets of A4 paper with everything about myself and the things I say, do and feel. History is important for diagnosis so take a close family member with you – a parent if possible. My parents are both dead so I took a letter from my ex husband who lived with me for 20 years and one from my brother to cover from when I was born to 16. I also took photographs of when I was a child. The most important thing? Be yourself. This is one time when you can allow the mask to fall and for everything that you suppress on a daily basis, to come out. Let them see you AS YOU ARE. Best of luck. X

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  14. You can get an assessment from Sarah Hendrickx who is based in Brighton, in person or via skype, and if I remember correctly that will cost you in the region of hundreds of £, not thousands. That’s where I’m planning to go when the time comes that I really have to know. However, this is not an official medical diagnosis, so it will not help you to get benefits etc. Personally, I’m just looking for peace of mind. Otherwise I second the recommendation to look at the NAS website. Also the Life on the spectrum website (sorry, old fogey can’t do links on her phone 😄), which hasn’t been updated in a while but I believe the advice is still reasonably current.

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    1. Oh yeah, I had blanked on her name! She’s pretty cool. Much easier way to go, even if it’s not official. I wish that her DX *would* “count” as official; she definitely knows her stuff! Thank you so much for adding your voice, luv ❤ ❤

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      1. Yes, I’ve read one of her books which was pretty good and helpful for me. I have also heard from other people that they would recommend her. One day…
        Getting a diagnosis on the NHS seems to be pot luck. There are some for whom the process is quick and easy, but many more who struggle and have to fight for it.

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        1. Her books rock! 👏🏼👏🏼. That’s so good to know about NHS. Kind of a crap shoot, similar to the US (except ours is all private, and our only hope is that insurance will contribute/cover it, which they only do for kids between ages 2 and 6. Ugh) 💞💞

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  18. Be persistent – My GP told me not to bother as I’d be taking valuable resources away from children! I said I have every right to a diagnosis and she finally referred me to the local adult autism centre.
    Be patient. I waited a year and then only got in on a cancellation.
    PS I’m in UK where diagnosis is free, I really feel for those in USA & other places where it’s not!

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  19. I’m in the Hull and East Yorkshire area of the UK. I had a mental health assessment about a month after my GP referred me, but from then it’s about a 2 year wait. My family all chipped in to help us pay for private assessment, the closest place to us was York (north Yorkshire), that cost £1250 in total and I received my diagnosis about 3 months after my first enquiry with them. The assessment took place over 4 appointments, 1 of which was my parents and brother and sister. I’d still have a year to wait if I’d not been in the privileged position of being able to pay.

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  21. Hi, I live in the UK. As others said Sarah Hendrickx is wonderful but if you need a full clinical diagnosis, I would recommend printing off the National Autistic Society’s checklists for GPs, and ticking the ones that apply, and also writing a page or two of bullet points about the various things that could indicate ASD for you (like sensory differences, friendships, work problems, communication and taking things literally, black and white thinking, “special interests”, mental health difficulties like OCD, etc). And make an appt with GP, give them the information from the NAS below, and your bullet point information too. I hope this helps! 💛 I know it can be very tricky in the UK to get a diagnosis, so giving as much info as possible is helpful.

    http://www.autism.org.uk/professionals/health-workers/gp-info.aspx

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