What did you do to start the process? Or did a doctor bring it up first?
What process did you go through? How long did it take?
did you find it difficult getting assessed?
Thanks.
What did you do to start the process? Or did a doctor bring it up first?
What process did you go through? How long did it take?
did you find it difficult getting assessed?
Thanks.
Yes, you have a calm and measured approach.
I need to rid myself of the built up anger and anguish. I am reading a lot of what other people have to say here and taking on newideas. There is a lot to learn, and talking on line is less pressured than f to f.
I shall read on. Thank you
It seems to me from what I read on this forum that your story is the normal experience of the nhs for ASD sufferers.
The mental health people in my area may be better organised but there is still a shortage of treatment time/manpower. I don't think CBT will be offered very easily or quickly even here.
Aspergers is a "new" diagnosis that many doctors (trained over the last 40 years) will not have been trained in. By new I mean that many doctors were trained before it was widely recognised beyond some more obvious cases in children.
GPs are able to dole out meds without any very specific psychiatric expertese. Their experience will be that a great number of people are made happy with this service so they do not look too closely at how suitable it is in many cases. I observed that this did not do much good for my father (also probably ASD) and this is one the reasons I have avoided meds.
ASD sufferers are, by definition, poor at communicating so we present with confusing and garbled accounts. This is compounded, as you say, by presenting to the doctor at times of great distress. How on earth a GP can make sense of such a patient presenting in that state is beyond me.
Following advice from this forum, I wrote down a list of reasons and detailed incidents in support of my request for a diagnosis. Thinking things out and writing them down, before you go, does seem to help. I also presented in a state of obvious distress, which probably helped convey the urgency.
I haven't received any CBT yet. Although CBT is supposed to be the greatest thing, I suspect that many patients are very sceptical, or resistant, which means that in many cases it simply won't work. A GP is, therefore, likely to have difficulty in believing that it is going to work in any particular case and therefore may be reluctant to spend budget. I would be interested to know how often it works in practice and how successful it is in ASD patients in particular.
Personally, I am trying to follow a self treatment by CBT approach. Debating, challenging and being challenged here on the forum seems like a good place to start as it allows us to clarify our thoughts and work out what is reasonable to each of us. Sometimes it is like looking in the mirror but it is sometimes easier to see things in other people's reactions than in our own actions and behaviour.
I have already had the lifetime of drugs, misdiagnosis and failed treatments. Perhaps, as I am currently well and coping, they see no point. I am retired, on a pension, so no benefits required. Why would they bother.
I have seen this lack of interest in retired people in all aspects of health.
There have been headlines in the press stating that mental health is given low priority. When I was being seen by a psychiatrist, our hospital had a new, dedicated ward. This was taken over by another department and mental health moved to another building. That has now been sold to a developer, and the much contracted comunity psychiatric team now uses rooms at the gps surgeries.
Even the government are acknowledging that services have dwindled and waiting times for treatments are going to be enforced. If you need in patient treatment in an emergency, you can now end up in another county, far away from family.
Perhaps your area is putting its house in order, but here, it can take in excess of 6 months to get cbt, if you can persuade a doctor to give something other than tablets.
My problem is, if I get ill, I can no longer understand/comunicate what is wrong. When I was bullied, they said I was paranoid and gave me antipsychotics. At that point, one of the cpt asked me if I was still having problems with colleagues. My reply was yes, but I don't care any more. He thought that was fine and sent me on my way.
Pills are cheap, they shut people up. They stop you thinking. By the time you get better, you cannot gather your thoughts to explain what was wrong and they have sicker people to concentrate on.
I am now thinking that If I can makeit without medical intervention, so much the better. I did talk to one person for advice and they said go private. They also queried whether I had anything to gain from diagnosis.
I hope this is not too much of a disollusioned rant, but I rather despair of getting anything constructive out of Drs these days.
My experience has been that I worked this out for myself initially. I have avoided going to the gp for depression and stress over the years so I have avoided drug treatments. When I eventually went, in the middle of a crisis, with a list of reasons why I thought I had ASD the GP was sceptical but agreed to refer me for diagnosis. I was offered a 12 month wait for a diagnosis so I ended up going private. I have now discovered that the local mental health services are gearing up to deal with ASD in a systematic and proper manner. The local Autism Support Service run by the local mental health trust is now being very useful and supportive.
I don't think that GPs are thinking about the cost, I suspect that many adults present with a very confusing picture and they have little experience of untangling our stories when we present. Their training probably wouldn't have covered it in any detail and they may not be really properly aware of how much benefit there can be from a diagnosis. A diagnosis of ASD should be much cheaper for the NHS than a lifetime of failed drug treatments and all of the consequential comorbities that accompany undiagnosed ASD.
I have been reading the above comments and come to the conclusion that, since mental health is in disarray with money and departments shrinking, Drs do not want the expense of diagnosing adults.
I was treated for depression and anxiety for 20 years, until I decided to ditch the pills and find outif I could cope without, now that I am retired.
I worked part time,in a job well below my ability. I was bullied intermittantly and thought myself mad or bad, because of my inability to get on with people, and being condemed to the existance of a presciption drug zombie.
After dealing with a lifetime of bullying, which I had locked in my inner cupboard of things I couldn't cope with, I am now happy quite a lot. I obtained my medical history, and was horrified by the inacuracies and my failure to communicate over the years.
I contacted my gp to discuss what I recognised as misdiagnosis and was offered yet more antipsychotics and referred to the comunity psychiatric team. They interviewed me and later my long suffering husband, and I saw the penny drop. Suddenly things changed. I had written to them about Aspergers, but could not raise the subject verbally.
They eventually called me in and said that I did not currently need treatment, but offered me a statement of wishes form to complete, so that I could recieve treatment I was happy with in the future.
This form asks questions about food and clothing prefferences as well as treatment, as though they were thinking I would have to be put in an institution.
I no longer have any trust in the medical services locally, and have found more help and support here in the last 2 months, than I got in 20 years of treatment. I have found the answers myself and feel wholy let down by the nhs.
My hope for the future is that my new found understanding will help keep depression at bay and I can survive without going back to any Dr on mental health issues. I do think though that they may have eventually understood and maybe things would be different if I became ill again. I think, perhaps my husband would speak for me, when I could not speak for myself in future.
Hi Guys
Brian is my name am from Uganda East Africa and a founder of Autism Mutungo a youth advocacy community based initiative.
Am here to find friends that can interact freely and advice on how the African kids to can get attention in the Autism diagnosis area.
Multitudes of fellow youth ooh adults too have never had any thing about Autism others will brand it witch craft.
Please guys feel so free to share and interact. You can like our facebook page too called autism mutungo canada.
Thanks alot God Bless you. Waiting to read from you.
I asked my GP, I was referred to the Adult Mental Health Services.
After 3 months, I had the diagnosis, a non - standard diagnosis, consisting of a 10 minute chat.
The psychiatrist said "aspergers traits not a problem". The note from the psychiatrisdt says, I have an Autistic Spectrum Disorder. I have a borderline case of asperger syndrome.
The NAS seem to think, it is blackl anmd white, asperger syndrome or not, biased towards children, treated, like an experiment, I needed post-diagnostic support. I am not a classic case of asperger syndrome. It does not help practically.
My real problem is dyspraxia, dyspraxia is much poorer understood and explained.
If the NHS fails, try privately, the British Psychological Society.
I feel that if the NHS sent a person who thought they had Aspergers for a private assessment what a lot of upset and expense would be avoided - they sure know how to waste time and monies - my private assessment was about 3 hours long and cost approximately £600 - with the NHS I saw 3 different people and still waiting for an assessment ( of course don't need it now) Sylvia
_tigger_ said:I was referred by my GP (after breaking down in the surgery and asking for some paper to write it all down as I couldn't face talking about it) to the local mental health team for anxiety and depression. I was diagnosed with PTSD for which I was treated with CBT (not too successfully I might add).During my visits to my care worker she noticed traits that she said pointed to Autism and referred me for a diagnosis. It took many months to get around to me but within a few months more the Autism team gave me a definitive diagnosis of Aspergers.
I was surprised at first to even be assessed, I had not considered this as applying to myself! It just seemed that everything the autism team asked and discussed with me fitted perfectly into my life experiences. I am glad I now have a label for my feelings, I'm just very bitter now that, as a 54 year old man, it was not looked at sooner.
I have had horrendous experiences connected to this syndrome throughout my whole life, yet no health professional I ever came into contact with bothered to look at the autism spectrum as an answer. I think I must have learned to cope quite well with life in my own little bubble, but the events that caused the PTSD produced a cascade of problems that meant I reverted back into a state where I was noticed as different again.
I think it is quite sad that it has to be this way to get diagnosed as an adult by the NHS.
You are far from alone in this tigger.
I was referred by my GP (after breaking down in the surgery and asking for some paper to write it all down as I couldn't face talking about it) to the local mental health team for anxiety and depression. I was diagnosed with PTSD for which I was treated with CBT (not too successfully I might add).
During my visits to my care worker she noticed traits that she said pointed to Autism and referred me for a diagnosis. It took many months to get around to me but within a few months more the Autism team gave me a definitive diagnosis of Aspergers.
I was surprised at first to even be assessed, I had not considered this as applying to myself! It just seemed that everything the autism team asked and discussed with me fitted perfectly into my life experiences. I am glad I now have a label for my feelings, I'm just very bitter now that, as a 54 year old man, it was not looked at sooner.
I have had horrendous experiences connected to this syndrome throughout my whole life, yet no health professional I ever came into contact with bothered to look at the autism spectrum as an answer. I think I must have learned to cope quite well with life in my own little bubble, but the events that caused the PTSD produced a cascade of problems that meant I reverted back into a state where I was noticed as different again.
I think it is quite sad that it has to be this way to get diagnosed as an adult by the NHS.
A friend of my mum gave her a magazine article about Aspergers and said she thought the symptoms were how she’d always described me. My mum then discussed it with my brother’s partner who’s a psychologist and she admitted that she’d always thought I had it, I wasn’t convinced as I don’t have any physical symptoms so to end the argument and mystery it was arranged that I’d see another psychologist for a private report/diagnosis. Took about 5 months.
Approx, 4 years ago I crashed and burned by uncontrolled life changing stresses with anxiety and depression referred to psychiatrist by the GP,, given pills, pill and more pills and false diagnosis of OCD, social phobia within a mental health setting which was full of psychopaths, druggies and alcoholics, the type of people mostly likely to affect my state of mind. So, I refused to take anymore pills (after 4 years of pill popping as a good patient) but as nothing was changing in my state of being I had enough of pills, so I got referred to a psychologist who highlighted that I was continuing on the observate signs of the Autism Spectrum, so for 4 years of my life was a waste going around a system which is not designed for autism aspergers diagnosis,, because only children have autism,, is that not right NAS. NO ! but you would think it so. Anyway, long story short adult autism clinical staff do a hour assessment and confirm the psychologists opinion. So in reality the GP and two different psychiatrists missed my condition.. BECAUSE SIMPLY THEY ARE JUST PILL PUSHERS, legalised drug dealers !
My son has been diagnosed with Asperger's Syndrome relatively easily but when it comes to getting a diagnosis for me it's a completely different story! My GP has no idea what to do so I've tried my own research. The local adult mental health team 'don't do that'. All I can find is someone who will do it privately for £600 but we can't afford that! Just over the county border is a service dedicated to adult diagnosis but I can't be referred there as it's a different county. I feel so in limbo till I get a diagnosis but can't see any way to get one. In a way it's helpful to read this and see it's not just me that's finding it hard but I just can't get started, let alone 'finished'!
I went for my initial appointment in November 2011 where I met a very nice mental nurse - first gate - then onto the trainee pshyciatrist - second gate - then onto the boss of the team - third gate - I took in a list of things I had noticed about myself - they were lost - so I had to see the boss again - forth gate - I took in a copy - then I have been phoning the Aspergers Drs secretary about every 2 weeks to see if any progress has been made - now I am told he is on a course to learn about an easier faster assessment - so I am still waiting - and if I had £600 I could be assessed in about 2 weeks - but I have not got that to spare so I wait - I do have a very good idea that I do have Aspergers - in fact I would bet on it
two of my sisters and a niece and nephew were diagnosed last year but they do have the money - I am the poor sibling lol - but I wait and I try to be patient -
I quite agree, Stuffed, they pay lip service to it but nothing ever changes. The attitude of some of the so-called professionals remains the same – indifferent. It's like I've always considered, unless you are on the Austism Spectrum how could you possibly ever hope to understand what it is like? Nick.
