UK - NHS ASC Failures: Please tell me your stories

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Correct me if I am wrong but there are only 2 adult people on this thread who did not self diagnose prior to the official diagnosis. There seems to be a huge gap in awareness but how did we actually become aware of the possibility we had AS? With me it was research for a person I was working with. Others may have had children diagnosed. I think there must be many, many misdiagnosed people out there who are on inappropriate medication, living miserable lives etc. OK a diagnosis may not be good for everyone but at least it brought me an undertanding of why I am like I am and it is better to know than wonder if I have mental health issues when I meltdown or am just a horrible person because I say something wrong.

How did you calculate that? I was self-diagnosed for a long time before I got diagnosed. I had never heard of AS until I started researching causes for my eldest child's behaviour, and reading it I had an epiphany moment.

I agree there is likely to be a huge amount of undiagnosed people out there - especially women (don't get me started on that one!)

After my son was diagnosed I started wondering about myself. I went to the local Autism Resource Centre, who advised me that I should get my GP to refer me for an assessment.

I saw my GP who agreed to refer me, and I gave him a leaflet from the ARC which gave him the information he required. Time passed. I checked with ARC - no referral had been received.

I contacted my GP's surgery and advised the receptionist that he had agreed to refer me. I was told that the referral would be made.

No referral was ever made and I gave up. I'm 45 years old, and don't think there would be any real advantage in an assessment/diagnosis. I found it really difficult asking my GP for a referral in the first place and I don't care to repeat that experience. My parents now think I have Asperger's, I'm not sure.

That's so sad that you felt that you might as well give up. I can't advise you what to do, but I wouldn't give up if it means something to you to know. Fax your GP a letter so once it's in writing they can't ignore it. Quote the NHS NICE guidelines and Autism Strategy...and perhaps your MPs name. If we all give up they will carry on letting us down.

That is not unusual. So many health professionals have no idea about AS and as it is not life threatening or interesting they do not care. OK, that is my personal opinion, but my experience leads me to believe that unless a condition is one of the targets (diabetes, heart disease) or life threatening (cancer) there is little point bothering your GP. However, it is also important to ensure that they do as they have promised. You are giving up because a GP who is paid a lot of money couldn't be bothered to do what they have said they would do. I think also it is important that you think about why you asked for a diagnosis in the first place. The more I read on these forums, the more I realise an awful lot of people are self diagnosing and are not being recognised by people who are paid to diagnose conditions. Many people do not get a diagnosis because the process is too traumatic. In my area we have to travel to a city that is not easy to get to for a diagnosis and if you are afraid of new places forget it. The people at the centre were lovely and told me that we should campaign for local resources. You may think you have got through to 45 therefore there is no point but I am a lot older and the diagnosis has not only made me feel more at ease with who I am but may help if I experience any meltdowns or health problems that I need to address in the future as I am very wary of doctors.

Sorry I should also have said whirlingmind is quite right. Put it in writing. No need to see your GP. He has had all the information but should not ignore letter or email.I have written on several occasions and had response. Good luck.