Published on 12, July, 2020
Hi all I'm new here and am waiting for a diagnosis. Just wondering if anyone else had the same problems I experienced getting to this stage.
I went to see my gp armed with a printout of the baron-cohen Aspergers test (scored 42/50). And told my gp I wanted to be referred. I was then told 'the NHS don't refer adults' (I am 37). I argued my point and told her that my suspicions of possibly having some form of autism were affecting my work and home life. She read through my test results and agreed to refer me although said that it may be rejected due to my age. This was 3 months ago. I have been chasing this on a regular basis and have been told numerous times that everything is fine and the referral has been made only to now find out it has gone to the wrong service and now has to start all over again. Have anyone else come across barriers from the NHS?
I live in norfolkand went to my gp in May 2017. After a couple of weeks he phoned me to say the referral had been delayed because he hadnt been sure where to refer me originally but now knew it should be ‘Asperger Servic Norfolk’ They sent me Aq, EQ, and RQ questionnaires within a fortnight. I completed and returned straight away. I then got a letter in July stating that my results show it is ‘highly likely’ I have asd and have been put on a waiting list for a formal assessment. It then went on to say I could be waiting ‘up to 18 months’ before I hear anything else. I tried chasing it up in March but their emails bounce back and their phones are rarely manned. It actually took a couple of weeks to get through to someone who told me that due to further cuts in funding she now cannot give me any idea at all of when I might get seen. So Trogluddite (see comments) is probably accurate in their opinion that there is no adult autism service in Norfolk at present. I have since gone private and got a diagnosis within 6 weekas of making that decision
If only I could easily afford to go private.
Norfolk appears to be in a right mess then. It's upsetting. It's not easy to just go out of area either with kids at school, husband's work and not having any childcare to be able to travel far from local area.
I know exactly what you mean. Honestly, I had one client who desperately needed the specialist autism support but at the same time, his life had become so chaotic that he absolutely needed at least some support but if you refer to the autism team, which could take years, you can no longer support him. What a dilemma!
Get it into your mind that you’re going to do this. Make the decision that one way or another, I’m getting this assessment. In fact, write it out, in a positive statement, how it feels now that you’ve had the assessment and you are much clearer and calmer in your mind. Just make the decision and do not allow the mind to throw up any objections, such as, you’re never going to get it, how are you going to get it, you haven’t got the money, and even if you did, you’ve got the kids and the husband to think about, and they’re more important than this. If you do that and stick to it, it will happen. I’ve already thought of an idea, which came as I was writing my comment. You could find out about private assessments, how much they are, where they are, are they appropriate etc and how much they cost. You could then write out what it would mean to you to get the assessment. I don’t think many people, outside of the autism community, realise how important the assessment is to us. And how could they, because it means something different to all of us and not all of us need one.
Last night, for instance, I was feeling heartbroken for my mum, thinking I know she’ll never go for a diagnosis, but then it occurred to me, she’s the only one in my family who has read up on autism, she’s still reading. Both of us know she is but we both also know that she won’t go for the assessment, but last night as I lay crying, I realised, she doesn’t need to, she’s learning all about her, quietly and gently, in her own way, in her own time, through reading the books I gave them and through me. She doesn’t need the diagnosis.
I needed it. To me, it was life. I had masked so well all my life, I no longer trusted myself. I had to know. I had to have the assessment. But the funny thing was, the magic happened after I had been to the doctors and asked for the referral, because for the first time in my life, even if nothing came of the gp visit, I had been brave enough to confront and stand up for who I thought I was. I wasn’t expecting that!
If you get all this information, and you explore your reasons for wanting the assessment, you could start a go fund me page to pay for it. That’s only one idea and I absolutely know you would get the money from a go fund me page, especially if other autistic people read it. We want the best for each other and if an assessment is important to somebody, then if they make the decision to have one, despite not knowing how it will happen (but with all the ways in which it won’t) it will happen one way or another. Either by a great idea you have or by some stroke of luck, you get the opportunity. My journey through the nhs system was smooth and happened quicker than expected, but I had a strong determination. Don’t give up. You could also go back to the gp surgery and ask where the nearest autism team is. You can get support with this, either through NAS or someone like autism plus. You don’t need a diagnosis to access support. They could also help you to explore other options and seek out the best for you, in terms of travel etc. Even your local social services are obliged to support you. I had a well-being officer from my local social services as my support worker for a while. Getting support has made a huge difference in my life. Even if it’s only somebody to talk to, who understands you or who is at least on your side.
My husband and I have decided I will save up and go private by the end of the year.
Feels good to have a plan.
Really happy for you Carly and I love your attitude you’re on your way
Got some good news. My referral was sent off again on the 27th June and I received a letter today asking me to phone for an assessment. I was on hold for 1h 15m and gave up in the end but still!!!! Will try them again tomorrow. I now this won't be the main assessment but I'm just glad it's being taken seriously