I was told this morning that I don't have Autism, I shouldn't be attending the Autism group (apparently, only people with a diagnosis can attend these - not what I've been told by the branch officer) and counselling will solve everything.
The person who told me this, hardly knows me and claims it's self esteem and confidence that need sorting out.
She's meant to be disability support.
Hi Stranger.
I understand how you feel about the whole diagnosis side of things. I had two separate GPs at my local practice (it's a long story) telling me that I didn't have AS and had issues with social anxieity instead. Fast forward 6 months and I received a formal diagnosis of AS. All I can say is be persistent, because I had to be just to get a refferal to a unit specialising in ASD diagnosis.
Hope this helps 
I think the quality of being a good non-judgemental listener and remaining impartial whilst giving support assistance is the key to a good autistic to NT care relationship. If the NT support is too clinical, taking a medical high ground, that is were problems arise as they just become false experts on someone else autistic experiences.
autismtwo said:Your story just highlights how dangerous opinions are in the hands of non-medical staff. The GP and your parents are right to challenge the qualification of this person,, because who else are they telling they do not have autism....
This is one thing that has annoyed me - both people who claim I don't have it, don't know me that well and neither have seen me have a meltdown or anything like that. The GP said he can't understand how it was decided I don't have it when it's a spectrum. He said it's like saying someone with hepatitis (spelling) doesn't have hepatitis because they don't share the same symptoms as someone else. Yet, there are different types of the illness.
I've not seen that particular GP for some years now; but he can see from what the other GP and psych wrote, that it's clear I'm on the spectrum.
The branch officer has now requested the name and contact details of this person. She's also trying to find out who runs the ASD unit at the college and who is meant to be running this Autism course. I just want to attend that course to see what they get wrong.
Welcome back thought we had lost you there for a moment,, as you became a NT. Your story just highlights how dangerous opinions are in the hands of non-medical staff. The GP and your parents are right to challenge the qualification of this person,, because who else are they telling they do not have autism....
Sounds to me like you do have a formal diagnosis, then, stranger.
:)
As far as the GP I saw this morning is concerned, I do have a diagnosis of ASD. The psych made it sound like he wasn't sure. He wasn't happy about this at all and said that if he has to, he will write a letter explaining that I do have Autism (like my parents, he wanted to know where this woman got her qualifications from to tell me I don't have it) and what adjustments will be needed.
Can you not consider the 3hr train journey. Maybe weigh up the pros and cons?
Something like this:
Not going:
Going?
maybe if someone did the journey with you? Do you have sensory issues that could be lessened with headphones? Play a game one the way to speed up the time. Travel durong quieter times. Stay the night in a hotel and travel back gthe next day so you can rest.
good luck. :-)
There doesn't have to be a centre. The clinical psychologist that diagnosed me takes referals from NHS as well as private patients. I emailed NAS to get a list of those near me (there was only one) as these are not on the public part of the database, (it took a week as they only check emails once aweek). You can then take the name to the doctor. The payment of the fee has to be agreed before you can make an appoinment, but GPs have budgets. The cost is about £500 I think. I think it would be a help to you.
This is why a formal diagnosis is so important.
If only because it means you can turn round to idiots that don't know what they're talking about and say "Well, a psychologist trained in diagnosising autistic spectrum conditions says I have it!"
Stranger, I can understand the difficulties you face with getting a diagnosis, but if I were you I would go back to your GP, ideally take someone with you that (a) you trust, and (b) knows and understands you to some degree, and (c) can, and is willing to, help you argue your case, and insist that the GP gets you refered to someone who can come to see you and do a proper formal diagnosis.
Until that happens you will keep coming up against problems like this, and be completely powerless to do anything about it. A formal diagnosis gives you a weapon in your armoury. It gives you power. It gives you some degree of control again.
eh? Just because I haven't been diagnosed, doesn't means there's nothing wrong. It took 23 years to be diagnosed with a brain condition, which is more than likely why I've got issues with my memory and other stuff. Does than mean until the diagnosis I didn't have it? Of course it bloody doesn't.
The fact is, the psychiatrist and GP haven't actually said I don't have it. Oh, and there quite a few people who aren't medically trained in that way who say I have it. The difference? They actually have a clue what Autism is and know me better. At least one of those people are on the spectrum and thinks his son might be too.
Technically, you do not have autism until you are diagnosed, that is the reality of the situation but this does not mean you do not have autism, you may be just undiagnosed as yet. Strange one for me,, you have not got a diagnosis but believe you have autism ? Seems a weird situation to be in ? Hope you get it sort out soon as you could be suffering from a case of psuedoautism.
autismtwo said:[quote][/quote]
The closest that will accept me is 3 hours by train. Did that journey last week and it was hell.
There's no point me going to the mental health team when it's sod all to do with my mental health.
They can come to you, my autism does not allow me to make long journeys. The diagnosis centre will understand, this could be a sign of autism to them. At the end of the day if you wish clarity, the GP only has an opinion he is not an expert, you should ask him to refer you, I am sure he will. Maybe the austerity cuts are taking place in your group and it is hardline policy of no papers no enter now.
Still waiting for you to answer my question...
stranger said:The closest that will accept me is 3 hours by train. Did that journey last week and it was hell.
There's no point me going to the mental health team when it's sod all to do with my mental health.
They can come to you, my autism does not allow me to make long journeys. The diagnosis centre will understand, this could be a sign of autism to them. At the end of the day if you wish clarity, the GP only has an opinion he is not an expert, you should ask him to refer you, I am sure he will. Maybe the austerity cuts are taking place in your group and it is hardline policy of no papers no enter now.
stranger said:There's nowhere to refer adults.
Don't just accept that!
What that really means is there's nowhere your GP is willing to refer you because doing so would cost the local authority and/or practice money.
It may be that there is no adult diagnosis service in your local area, but then your GP should be making the case for you to be refered to an out-of-area service.
You have the legal right to have a formal diagnosis, and cost (to the GP/PCT) should be no barrier to that.
stranger said:I was only told I might be on the spectrum; but without the full testing, it's difficult to say. (because there's a lot of overlap between Autism and my other diagnoses)
The person who told me this is supposedly disability support at college. She also tried some years ago to diagnose me with Dyslexia on the basis that I struggle with reading. I struggle because I'm partially sighted.
Why put a complaint into the branch officer? She's done nothing wrong.
I've posted this elsewhere and was told that many people on the spectrum do have issues with self esteem and confidence.
I spoke to the branch officer last night who asked for the name of this lady and informed me there's a course at the college on what Autism is. Maybe she (disability support) should go on that... After all, she seems to struggle to understand that females are affected differently and it's a spectrum.
The only other suggestion I can make is to approach your GP and ask to be referred for diagnosis. Alternatively, directly make contact with your local NHS mental health trust and ask whether they accept self-referrals. Before a formal diagnosis can take place, they may suggest a few psychotherapy sessions first so that they can get a better idea of whether ASD is a likely cause or whether it could be some other issue. (Due to suffering from depression and anxiety issues, I sought psychotherapy. After several sessions, I was referred to a psychiatrist and was then formally diagnosed with Asperger Syndrome.)
I was only told I might be on the spectrum; but without the full testing, it's difficult to say. (because there's a lot of overlap between Autism and my other diagnoses)
The person who told me this is supposedly disability support at college. She also tried some years ago to diagnose me with Dyslexia on the basis that I struggle with reading. I struggle because I'm partially sighted.
Why put a complaint into the branch officer? She's done nothing wrong.
I've posted this elsewhere and was told that many people on the spectrum do have issues with self esteem and confidence.
I spoke to the branch officer last night who asked for the name of this lady and informed me there's a course at the college on what Autism is. Maybe she (disability support) should go on that... After all, she seems to struggle to understand that females are affected differently and it's a spectrum.
stranger said:I was told this morning that I don't have Autism, I shouldn't be attending the Autism group (apparently, only people with a diagnosis can attend these - not what I've been told by the branch officer) and counselling will solve everything.
The person who told me this, hardly knows me and claims it's self esteem and confidence that need sorting out.
She's meant to be disability support.
I would put in a written complaint to the branch officer and higher, including (if possible) a letter from your GP.
