"Struggle with autism diagnoses"
About: Cumbria, Northumberland, Tyne and Wear Cumbria, Northumberland, Tyne and Wear North of England commissioning region North of England commissioning region Northumberland, Tyne and Wear NHS Foundation Trust / Primary care mental health Northumberland, Tyne and Wear NHS Foundation Trust Primary care mental health NE3 3XT
Posted by Alienor123 (as ),
After a lifetime of searching for answers to my many health problems and the disparity between my strengths and weaknesses (high IQ but terrible executive functioning skills), I recently discovered I may have Autism. As a female I knew it would be hard to get the GP to refer me for diagnosis ( see: https: //www. youtube. com/watch? v=ZBOTkvM1mJw ), but I made an appt in february and went prepared with EQ test results etc. The GP was very understanding and referred me to the IAPS team in sunderland.
IAPS did an initial assessment and agreed I should be referred to the autism diagnosis centre in morpeth, where the waiting list was a year. At the end, the nurse who conducted the IAPS interview decided she could refer me via a letter to my GP, or I could refer myself. I asked the difference and she said-if you refer yourself you can put in all of your information. If you dont, your GP will forward my email and they wont get any of this information ahead of your assessment. I had 3 files full of information to condense into the letter but at that moment it sounded like the better option for me to do it (again, it is a typical autistic trait to make a silly decision 'in the moment). I never should have agreed as inability to do these things is one of my main difficulties- a big part of why I am being referred.
9 months of panic later I finally managed to make an appt to see another GP at my practice as I wasnt coping with day-to-day life at all. I went unprepared this time, as I had been told there would be a letter from the IAPS team telling my GP where I had been referred and assumed this would be simple (Me: "Please could you push it through as I havent been able to". Doc: "Yes of course"). How wrong I was!
As soon as I said the referral was for Aspergers, the GP rolled his eyes and said-No, we don't do that. I explained the referral situation, and the fact I can't use the phone because I think I have have auditory processing problems which is why it has gone on so long.
He became very irate, literally throwing his arms around and leaning over the desk quite aggressively-Of course you can use the phone, you're talking to me fine! I explained this problem with phones was very common among autistic people.
He implied only boys could have aspergers, which I informed him was incorrect. He then asked me about my job history, which fits with the experience of many with the disorder- top of my class with many awards but unable to gain/stay in employment because of interview techniques and social problems.
He also told me the fact I focus on researching autism was the problem (intensely focusing on a special interest is a symptom/coping mechanism of aspergers). He ignored or dismissed all of the other information I gave (I am extremely knowledgeable on the subject so could defend myself well against his dismissive comments).
He chastised me for using medical terms like "auditory processing" (again, part of aspergers is the inability to use certain, often more appropriate, language, so I found it very difficult to explain without these terms! I explained this but this obviously annoyed him more.
By this time I was crying hysterically (I was so shocked) and felt very intimidated but he argued with me for a full 20-25 mins.
He said I should just get someone to do things for me. I told him my partner could not help me as he had been diagnosed with Dyspraxia as a child and had similar problems, and had a full-time job to keep. He dismissed this saying that diagnoses like this were not worth listening to.
I explained I was now allergic to so many things (immune problems and food sensitivities are yet another indicator of autism) that I could hardly eat anything and was finding it very difficult. He replied with-Have you lost a lot of weight? NO! (He didn't weigh me and I am very slim anyway- I don't have any to lose). When I said I managed to survive by binge eating certain foods and over-indulging when I do eat, and he said -Don't we all? ! .
He said he should do some research on this subject as he did not know anything about autism (so why was he still trying to argue with me? ). When I suggested a source, he said -I'm not going to look. If I focus on it I'll just start thinking I have it too! (I think this was supposed to be a sick joke about people "googling" symptoms and hypochondria)
Having given up, I asked if I could at least be referred for my bowel problems. It had taken a lot of effort for me to make this appointment. He refused, because apparently I had never had any bowel problems (I have throughout my life, and I have been referred for them previously from that practice). Because of his manner, the only information I felt comfortable giving him was that I often had blood when I went to the toilet. He dismissed this too.
He then started complaining that he had patients waiting, guided me to the door, still crying, and finished with-Make an appointment for 3 weeks time. By then you might have a job. I'm guessing from the fact I currently have no job, he thought I was trying to get benefits from an autism diagnosis? I am a carer and have just received inheritance which means I do not need benefits, nor would I even be eligible. I have claimed jobseekers allowance for only 3 desperate months in my entire life (I am 29).
I have been trying to get help with paying bills for 3 months now but no advocacy services etc will make allowances for the fact I can't use the phone. I have been in touch with at least 5 of these services but NOT ONE has sent me a letter. Some continually phoned me despite me telling them I could not answer the phone, which caused me anxiety. I find this situation absolutely ridiculous because I do not even consider myself particularly vulnerable (I have a good vocabulary etc) yet I can't even get help. What is happening to deaf/non-verbal/Learning disabled people in my situation?
I have been a complete mess since this GP appointment, unable to feed, wash, clothe myself or sleep properly. I was NOT suffering with depression before this appointment, but this experience has definitely sent me towards it. Thankfully, an autism support worker since referred me to the diagnosis centre in Morpeth, but there is still no sign of help from any advocacy services so my stress continues.
NICE guidelines and the autism act 2009 state that there should be a clear pathway to adult autism diagnosis, but all I have experienced is a system which actually puts barriers in the way of people with autistic-like problems. It is disgusting the way I have been treated by many health professionals in the past and I am sad to see this is getting worse, not better.