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ASD_Diagnosis_Project

Your experiences of receiving an ASD diagnosis

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Hello!

 

My name's Lydia and I'm part of a group of researchers at the University of London who are interested in hearing about people's experiences of receiving a diagnosis of autism spectrum disorder in the UK, either your own or as a parent of a child with ASD. We are trying to collect the opinions of as many people as possible so if you fall into either of these groups we would love to hear from you.

 

We are carrying out a large study that hopes to discover what makes a good experience and what areas could be improved. The findings, alongside data collected from healthcare professionals working in this area, could help inform the way ASD diagnosis is done in the future.

 

Information is collected anonymously via an online survey which takes around 20 minutes. It’s easy to get involved or find out more information about the Autism Diagnosis Project at our website;

 

www.gold.ac.uk/psychology/research/asd-diagnosis

 

 

Many thanks,

 

Lydia

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officer A-S, spam police general, should i be suspicious of you? i have to say i was diagnosed in 1995 so i cant really rember, all i know is ive always felt like the blue sheep, (politcally correct version lol) and my brain is like a computer, im almost cold and emotionless at times.

Edited by A-S warrior

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<Sings the Monty Python spam song>

recently diagnosed and not through the NHS who are a joke if you are an adult.

 

What is with all these students suddenly appearing and doing research. Has AS become "trendy"?

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officer A-S, spam police general, should i be suspicious of you? i have to say i was diagnosed in 1995 so i cant really rember, all i know is ive always felt like the blue sheep, (politcally correct version lol) and my brain is like a computer, im almost cold and emotionless at times.

Not suspicious warrior, gold.ac.uk is goldsmith uni. They have to do it part of the course, because they can't base it on themselves they. Have to ask people with an asd or they may get the incorrect information

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<Sings the Monty Python spam song>

recently diagnosed and not through the NHS who are a joke if you are an adult.

 

What is with all these students suddenly appearing and doing research. Has AS become "trendy"?

Psychology course at uni

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I was diagnosed age14, but I didn't know until I was 16 and was at first in denial but then I researched it and came Cross nas and they helped me understand myself better and to cope with it, although its hard goOd deal. With at times

Edited by Special_talent123

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Not suspicious warrior, gold.ac.uk is goldsmith uni. They have to do it part of the course, because they can't base it on themselves they. Have to ask people with an asd or they may get the incorrect information

 

 

 

righto then, all present and correct!

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Glad I passed the spam inspection! We have support from the NAS and you can see our project listed in their research section in case you had any doubts left!

 

http://www.autism.org.uk/get-involved/volunteer/take-part-in-surveys-and-research/research-recruit-people-or-participate/research-projects-living-with-autism/experiences-of-receiving-an-autism-diagnosis.aspx

 

Many thanks to those of you that have completed the survey, and for your comments above.

 

Scafell Pike - I know there is quite a lot of research being done into ASD in general at the moment, I think in part this is because awareness of the condition has increased greatly in recent years and as such so has the number of people being diagnosed.

Kilimanjaro - I don't know Lauren but I'll keep an eye out for her! Hope the research went well.

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I have filled out the questionnaire via the NAS website.

 

There are a couple of comments I would like to make:

 

Firstly, it takes years and years and years and years of trawling through a system and seeing various professionals - who often do not communicate with eachother before you even get a diagnosis.

 

By the time you get a diagnosis your child is often ill, or out of school, and has by that time developed other co-morbid anxiety related disorders.

 

You get absolutely zero help from the mainstream school system due to the funding implications of supporting the child.

 

You are treated like a problem parent and left to get on with it.

 

When your child does refuse school you are threatened with the Educational Welfare Officer and prison.

 

Your life becomes totally absorbed in trying to deal with and cope with a child that is so unhappy, self harming, suicidal etc.

 

It is a very stressful time. Yours [and all the families] physical and mental health is affected over years.

 

You have good times and you have bad times. It is shortsighted to ask "how have you felt in the last week". This week might be good. Next week I may consider death a release. The following week maybe joyful. It is an absolute rollercoaster and merry-go-round of emotions.

 

You become disillusioned with people, professionals, education, health etc.

 

You either give up and fall by the wayside. Or you toughen up and learn the system.

 

You practically become a solicitor with in-depth knowledge of the educational and NHS service system and you fight for everything your child is supposed to receive.

 

You navigate through an educational system that forces you to Tribunal and forces you to spend vast amounts of money on independent reports to prove needs.

 

Finally you win.

 

Then you start to claim your life back.

 

We've had two educational tribunals. We won both of them. At the last one we won and our son was moved to an independent special school for children with Aspergers/average cogntive ability and communication difficulties. He is finally back in school. He is making progress, but has an Anxiety Disorder and OCD due to chronic levels of stress endured over years in a school system that was torture to him.

 

Now I feel more positive than I have for years.

 

Like many on this forum, I come here to try to offer some advice to other parents who are banging their head against a brick wall - because I know what that is like.

 

Do some parents become depressed? I would challenge anyone to go through what most parents have to without becoming depressed at times.

 

In our situation we were treated appallingly by our local authority.

 

I have sat at meetings with 10-14 professionals sat opposite me all denying what I am saying or denying access to x, y or z. And I have stood up to all of them, represented myself legally at an educational tribunal and won. I cannot tell you the elation you feel having finally been listened to and believed and given what your child always needed.

 

Anyway, rant over.

 

Hope this research is not going to be a 'refrigerator mother' findings due to lack of attachment due to mental health issues such as depression?

 

Having my son and looking after him has never made me depressed. All the professionals and agencies that are supposed to help and support have.

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I just done the questionnaire.

 

I would endorses what Sally said. I would also add the the questionnaire did not give me the opportunity to express how we went through the diagnosis process.

 

At aged about 2 our son was referred to a speech therapist, they were very thin on the ground and over the next 18 month saw someone about 6 time and given advise, etc. at about 3 1/2 our son suddenly started to talk "Normally", I always felt this was despite and not of because he attended a speech therapist. At that point it was a case of "He's OK now, goodbye"

 

We were concerned by this time that he did not show any interest in playing with other children. We were told it was our fault as we were older parent and did not mix with other people with same aged children. So we took him to as many play groups etc as we could but he would just sit with us and never want to join in. Started Pre school same thing. He seemed happy enough there but never realy fitted in. At school, same thing. It was only when he failed to learn to read that school sat up and took notice, but then all of a sudden he could read and according to the school reading test by the time he was 7 he was a year ahead in reading. (Subsequently this was shown to be misleading). By this time he was at School action plus, and things started to move. Where we lived at the time diagnosis for Autism (Amongst other things) was done by the educationalist. Our son was first be seen by a educational psychologist and then referred to the multidisciplinary team. From referral at about 5 1/2 to diagnosis took about 2 about years. Our son was never bad behaved, we never had any real concerns about his behavior at home. Apart from delayed speech he developed "Normally". He had his funny ways but nothing that concerned us. It was only when he went out into the big wide world that any problems showed up. Its just the same now.

 

We did not notice at the time but when we look at photos of our son from a toddler on he nearly always has a worried look on his face.(Not now, at the present time he is happy with life)

 

So any way the answers to the questionnaire don't realy reflect the diagnosis proses we went through.

 

Also the bit about the Last 2 weeks?. Made me laugh, I stopped worrying about what I look like a long time ago. As Sally said, for us life is pretty good at the moment, but not always been like that. And I have a lot of concerns about the future, but that does not impact on how I feel today.

Edited by chris54

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For many getting a diagnostic for their child (Or themselves) is only the start. For Parents it's the getting for right education for their child which poses the biggest hurdle.

Edited by chris54

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Chris and Sally many thanks to you both for giving such detailed and insightful accounts of your experiences. I appreciate your comments about not being able to fully explain the process you went through and will incorporate some free text boxes into the survey to allow people to expand on the basic details of their experiences.

 

 

Hope this research is not going to be a 'refrigerator mother' findings due to lack of attachment due to mental health issues such as depression?

 

Having my son and looking after him has never made me depressed. All the professionals and agencies that are supposed to help and support have.

 

I can assure this research will make no such claims. It is centred on finding out what people think about the services currently available for diagnosing ASD and the subsequent support offered. Questions on depression and anxiety are included in the survey for both individuals with ASDs and their parents to see if this is an area in which people would like more support/services. I agree that limiting asking about such symptoms to a two-week period means we will probably not get a full and accurate picture of an individual's mood but at present these are the most validated and widely used scales to investigate symptoms of depression and anxiety, even if it just means we get a snapshot of how someone is feeling at that moment in time.

 

Thanks again for taking the time to share your experiences, I'm beginning to realise what varied and often incredibly complex paths people have to take to get a diagnosis.

I will be happy to send you a copy of the results if you would like.

Edited by ASD_Diagnosis_Project

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I think it could be useful to have two questions like:

 

What has been the worst part of seeking a diagnosis or support and how did that make you, your child and the wider family feel?

 

What has been the best part of ............. [same as above].

 

At my worst times I have thought about ending my life and my child's. Thought about it, but never any intention of doing anything about it. But just knowing that there was the possibility of that release kept me going. I can completely understand how another parent may take their own life and that of their child. I don't agree with it or justify it. But you can be left in absolute dispare for years and not everyone is strong enough to deal with that.

 

At our worst our child was self harming, attempted suicide, was out of school with autism and OCD, refused to leave the house at all. I was a prisoner in my own home 24/7 for about a year. School were not interested at all. The LA threatened me with the educational welfare officer.

 

So whilst I am caring for my son with serious mental health issues [as confirmed by CAHMS]. I am also having to prepare a legal case of over 4000+ pages of documents and reports. I have to represent myself legally at the Tribunal and I have to counter argue the LA's expert witnesses and their arguments [when they have specific training and experience in doing this].

 

We had to put the family into serious debt to get these independent reports and expert witnesses to attend the Tribunal.

 

I have seriously thought about asking Social Services to take my child into care because I felt I could not meet his needs and I was afraid of what he might do to himself. I have even thought about taking him and leaving him in the Clinical Psychology department so that they actually HAD TO DO SOMETHING.

 

I really don't know what we would have done IF we had not won the appeal.

 

Things are alot better now generally because he is in school and has a full therapy and health team working with him. But his OCD is currently very bad and means I am spending most of my time dealing with his compulsions and rituals whilst at home.

 

I also think that these desperate times and how we all felt were a direct result of lack of support and services. If there is no funding for services it does not matter what they recommend.

 

We have finally managed to get a social worker into the house to assess my son and myself as his carer. That has taken 7 years. Yes seven years of phone calls and letters and complaints.

 

YET the government is proposing a new 'one assessment' for SEN that is supposed to include social services and children are supposed to be supported up to age 25 [currently age 19].

 

How is that supposed to happen when it has taken me 7 years to get an initial contact from a social worker?

 

The government is talking dribble, and I am sick and tired of being sold a promise that is as empty as old mother hubbards cupboard.

Edited by Sally44

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Hi

 

Just completed the questionnaire. I fear that there are a number of questions that required more explanation and wasn't enough space to do so. Also, questions from around 60%+ could be misleading. Some questions e.g. relating to 'do you feel anxious, difficulty breathing', etc etc could be attributed to pre-existing medical conditions e.g. asthma or heart defect, and not necessarily down to stress, depression, etc etc. Lastly, questions relating to feelings of worth, etc might be specific to one small area e.g. utter frustration in education system/support and not a global issue. Apologies if I've misread anything (or not read!), thought it worth highlighting.

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Yes I also wondered about that as I have Fibromyalgia, asthma and diabetes which all produce symptoms which are unrelated to the aims of the questionnaire.

 

Also because it is a 'window' shot of the last week I responded no to most of them, when I could have said yes to most of them a few months ago.

 

So I think it really is going to depend on 'where you are' in the process. A parent of a newly diagnosed child maybe feeling really optimistic about getting support now the diagnosis has finally come. Ask her those same questions next year though!

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Cmuir and Sally44 - thanks a lot for your responses and comments. I'm the editor for the survey for adults with ASDs and have gone through and added free text boxes for additional comments at each stage of the diagnostic process, along with questions on good/bad aspects of diagnosis. My colleague who is administering the parents survey is away today but will do the same on Monday. I agree some sort of clarifying point should be made regarding whether certain symptoms are related to an existing medical condition.

 

Sally, it is an interesting point you raise about depression/anxiety in relation to stage in diagnostic process and is something I think we should investigate to see if there is any correlation between the two. Your story highlights many of the flaws in the current system and the uphill struggle getting a diagnosis and support can be, I can only commend you for your perseverance and dedication. I know that, even with changes, our survey will not be able to capture fully people's experiences. We intend to use it collect a broad overview of experiences and opinions nation-wide and then undertake more in-depth interviews with people to investigate more fully issues raised in the questionnaire.

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Currently filling in the survey (as an autistic), on the question about "what therapies would you have liked to have received as a result of your diagnosis", 'social skills training' is on twice. Also i wouldnt call ASD a condition, blue eyes is a condition.

 

(the next paragraph was writen when i saw the questions).

The AQ test i feel is a really unrealistic way of assessing how im feeling now as at the moment "i dont know what the answers are" (because there is no context to go with them) and im forced to choose a positive or negative when i feel neutral. Also it doesnt allow for dyslexia or other additional disablities. Also i tend to be around autistic folk rather than NT folk so how i am around autistics is different to how I am around NTs. It really confuses me how they tend to ask the same thing but the other way around and the double negatives eg "i dont agree that i dont find (this situation) difficult" can obsure my answers because i dont understand the question.

 

The change of name from 'disorder' to 'condition' hasn't officially been done yet, also how MH charities experience and respond to ASD is different to how they respond to MH in NTs. ie recommending a charity that would probably have more difficulty understanding my needs than my closest friends is likely to be misleading because i don't automatically tell people about my autistic status.

 

I'm going to fill in the other surveys now, (just realise this is not possible because im a daughter of an autistic in denial with a diagnosis.)

Edited by trekster

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Hi trekster,

 

Thanks for filling in the survey. I know the AQ gets mixed reviews from people, and there was a bit of debate around including it. In the end it was decided to keep it in as with an online survey where we never meet partcipants or get to know their background it is a quick and standardised way to get an idea of how many traits associated with the autistic spectrum a person has. Despite it's flaws (and confusing double negatives!) it may help us see if there is any pattern between extent/type of autistic traits a person has and the ease with which they can get diagnosed. For example past work has found that in young children those who present with delayed communication tend to get diagnosed faster than those presenting with behavioural problems.

 

Thanks again for your comments, especially those about mental health services. Whether there is a need to develop mental health services that are specialised towards supporting people with ASDs is an area we hope to learn more about via the survey.

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hi have just done survey just watned to see is it worth doing over as have been down this route 3 times in last few years ,suppose all were different so should i be doing survey for each child?would be interesting to see results on an area basis to see the differences.

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I've completed it but we had a really positive experience of the diagnostic process but given that I now work for an ADHD & Autism Support charity I know that unfortunately our situation is not the norm.

 

Lynne

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hi have just done survey just watned to see is it worth doing over as have been down this route 3 times in last few years ,suppose all were different so should i be doing survey for each child?would be interesting to see results on an area basis to see the differences.

 

i would fill it in for each child personally. i know of parents who were told 'you were looking for aspergers' long before their child was diagnosed. Also if you have 1 autistic child diagnosing another can be much harder. We shouldnt have to fight for every scrap of help we get.

 

My family is having a major crisis due to authorities and people who should know better putting pressure on us to cope. My mums attitude is to blame me for my ASD "because she doesnt understand" but when my gran goes i will have a big gaping hole in the translator for the family. i was having multiple meltdowns on the day i was filling in the survey. i cant even be myself at an autism social group, the one i invented the name for has rejected me.

 

Lynden im really happy for your family having such a positive experience. I hope your experience can help to educate diagnosticians in how to get it right 1st time.

Edited by trekster

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Dear ASD_Diagnosis_Project

 

I applaud that you and others are doing research on this topic. How large is your study - i.e. what percent of the population have you surveyed? Who is your control group? What other sources have you based your research?

 

Forgive me for being slightly skeptical because AS itself didn't make it into the DSM until 1994 and now it might be removed altogether from DSM-V which is in advanced preparation

 

Don't get me wrong, the more research done the better. But will it be used and published in a peer reviewed journal?

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Problem is what control group would be the right one to compare ASD diagnoses? i cant think of another invisible disability that is better catered for or just as complex.

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Robert I do think your idea of a control group is very valid, and Trekster even if there is nothing comparable possibly all the better.

 

If I have an issue regarding my GP it is he does not get AS. For him he sees this condition as much as anything else he deals with. I went somewhere got a diagnosis, are there any pills he can give me to alleviate the situation. He can see no reason as to why this might be messy as a process and that it throws up just as many questions as there were going into the process. In some ways if research such as this is stand alone it allows people such as GP's to balance them all out at the same level in their mind. This is like saying I have 10 patients with 10 different diagnosis they are all equal. They might be in one respect as individuals but can you say this in respect to resource allocation, I don't think so.

 

If I had to comment on my own diagnostic process is that at the end of the day there is not a lot which has changed in my life, but the process itself was traumatic. As such the ongoing resource needs might be minimal I do not take medication but there might be a need for resources to be put in place around the process, there was nothing and no follow up even. The issue is I think many GP's think that once they have paid for the diagnosis thats it and I will simply wait for the results and assess the consequence then. In the case for AS diagnosis in adults they might have completely missed the point where help was needed.

 

Roberts idea of a control group would be very valid in simply highlighting different realities. I sat down with my partner yesterday as I am preparing for an assesment a few days out with my Primary Mental Health team. My partner is used to appointments related to her own hearing, and in some ways treats my appointment as she would one of her own. I asked to think about would she want to go on Wednesday, her imediate reaction was she would be fine then she started to think about what the nature of the appointment may be like and what it was looking at and said no she would not want to go, and to be honest would not want to say anything at all.

 

We somehow need to get people such as my GP over this initial reaction of 'I'm sure it will be ok lets see what the outcome is' and to start to think through the real implications not just of the diagnosis but about having to go throught the process.

 

Just a few thoughts.

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I cannot comment on receiving a diagnosis because I do not have one but I can comment on the process of requesting one!

 

The GP I initially approached believed she was in a position to give her opinion based on a 5 minute conversation with me. In her 'expert' opinion (I say this in a tongue-in-cheek way), she said there and then that she believed I may have very mild (ie. not important to acknowledge the difficulties of) Aspergers and didn't warrant an assessment.

 

She then referred me to the local Learning Disability team who said that it was an unsuitable referral. After this she referred me to the Psychiatrist who covers my area who said firstly that I was a 'Waste of resources' and secondly that as HE knew nothing about ASD he was not in a position to refer me to someone who did. He then went on to discuss me (or so I was told) without my permission with someone I had discussed some of my issues with and this 'confirmed' I did not require an assessment.

 

I then sought a private opinion where the assessor did not give weight to important facts I provided him with and did not speak to people who may have given a rounded picture of my life. His report included a number of errors. He chose to disregard the high score I had on the very easy to fill in Ritvo test, instead focusing on the slightly lower than cut-off score on the very difficult to fill in AQ test. His assessment of me was in my opinion very much of the 'tick box' variety and as I came over as 'normal' showing no ticks and demonstrating an awareness of reciprocal conversation, not demonstrating a strange way of walking and stopping myself or pointing out to him when I was becoming long-winded in my report he concluded that I was not affected 'enough' to be 'disordered at all times'. I found it in all honesty, an insult to my intelligence.

 

The whole experience was so stressful that at one point I was begging to be taken into the local psychiatric hospital. At this point my youngest child was 6 months old. My son had received his own diagnosis 7 months before and I was trying to come to terms with this and my own guilt that I believed I had passed my own difficulties onto him! There was NO support, NO-ONE to turn to, NO sympathy and NO understanding. In this area, adult assessment and diagnosis is a JOKE.

 

Alternatively, I would say that the experience of my son receiving his diagnosis was very straightforward and there has been a moderate level of support. He is very lucky to attend a very well respected special needs nursery and will be going into an ASD-specific primary class this year. Unfortunately, other parents in this area are now experiencing the effects of assessment and diagnosis becoming community-based as opposed to being centralised and I have seen how difficult the process is for them.

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Lyndalou I just wanted to say what you have said does not surprise me at all. In respect to you not having a diagnosis what I would say is that the most important thing is what you think yourself about this and not what anyone else might feel.

 

In my own life I reached a point where I had done my own research listend to what people who knew me had to say and had decided I would self diagnose myself with AS and was comfortable with my decision. Following a suicidal eppisode away at university I was refered to the mental health services in another city. In that assesment I was told i was 'too intelligent to have AS' and that 'If I could cope with a masters level course there were no mental health issues there in reality'. I was so incensed that I wrote to the director of mental health who aranged for an AS assesment whether this was to support a member of thier staff or not I am not too sure.

 

My biggest concern on the day of the assesment was what if this person said they felt I did not have AS yet after a massive amount of what I honestly believed to be balanced self argument I had come to a different conclusion what would I do then. I nearly didn't go through with the assesment but convinced myself to trust my own judgements.

 

Lyndalou in many ways I feel you should sit happy in your own personal opinions and your case just highlights how destructive the system really is for adults. There are people who come to the forum and want a diagnosis and I think why, not because of what the diagnosis means but because they have no idea about the process to get there and what this means ans the amount of self reflection you have to go through and how easily this is challanged by professionals who simply do not have the training or experience and as such should be honest and keep their mouths shut.

 

I am sure there are adults out there who have had good experiences and so I want to say these opinions are based on my own experiences and I would like to think they were isolated to just one case, but as a realist I know this will not be the case and your post Lyndalou simlpy highlights this, join the club.

 

Best wishes.

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Alternatively, I would say that the experience of my son receiving his diagnosis was very straightforward and there has been a moderate level of support. He is very lucky to attend a very well respected special needs nursery and will be going into an ASD-specific primary class this year. Unfortunately, other parents in this area are now experiencing the effects of assessment and diagnosis becoming community-based as opposed to being centralised and I have seen how difficult the process is for them.

 

It's possibly worth mentioning that as far as I remember Lyndalou got her sons diagnosis from the same centre as I got my sons which has sadly now closed. I'm sorry you're having such a rough time getting listened to as an adult :/

 

Lynne

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Thanks Lancslad

 

I feel very much more comfortable in my own skin now than I did this time last year and yes, technically I do not 'need' a diagnosis; just by knowing I have been able to make additional changes to my life and understand and like myself a bit more!

 

The only thing is that self-diagnosis seems to be so looked down on. There is an assumption that professionals DO know what to look for beyond 'lack of eye contact' (a bug-bear of mine since it is inappropriate eye contact, not necessarily lack of...not taking into account learned behaviour etc) and the other key signs which are indicators of ASD in children but not necessarily at all times in adults... I do not doubt that the person I approached for my private assessment has a lot of experience in working with psychiatrists in order to diagnose adults with ASD and I said this to him after I received his written report. However, I would argue that if he is only referred individuals whom GP's or psychiatrists deem to be appropriate candidates for assessment, possibly because they are approaching these services when at crisis point then it stands to reason that the vast majority are going to be of a certain 'type' who those professionals believe most fit the 'profile' of AS and that does not necessarily mean that a great number of people don't fall through the cracks and are not referred in the first place!!

 

I would be quite happy to live the rest of my life without a diagnosis. However, for many years I have wondered what my purpose in life is and as soon as I realised that my problems (and my strengths) have stemmed from having AS I knew that I didn't want anyone (especially girls) to fall through the cracks any more and I want to be able to help and support the kids coming up at some point. Unfortunately, I can't be taken very seriously on the basis of self diagnosis. :(

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Lyndalou I can fully understand how you feel in that a lot of this is not about yourself.

 

I know my diagnosis is important to me in respect to my son and any future generations in that it puts down a signpost for any genetic elements which may be of use to individuals in my family in the future. Throughout my diagnosis process I was anxious that my parents were very open about previous generations but they were in denial a lot about this which I can understand but was so annoyed about.

 

I can also say that having a diagnosis allows personal peace of mind in being able to come to places such as this forum and say I have AS. I have questioned is this really important and to be truthful I personally would never draw any different conclusions between someone who held a 'formal' diagnosis or someone who was informally self diagnosed. I do suspect there are individuals to whom this might be important and might feel differently about me depending on how I came to the diagnosis. What I would say is that following my diagnosis I had the opportunity to join an AS group at university. I walked into that room feeling fraudulent in a way, I was not sure how confident I suddenly was in my diagnosis at all. Within a short period of a couple of hours I was very comfortable and could see a lot of my traits in the other individuals in the room. In all honesty I believe that was the point I came to terms with my diagnosis as I decided to simply accept myself for who I was because they did. I am not sure if anyone who was in that room were self diagnosed, I kind of suspect given funding arangements they were not, I hope that wasn't the case but I suspect it.

 

I would never want to think that AS becomes some sort of exclusive club which you need a pass to join and that those passes are handed out in a very selective way. To do so would say as much about the people handing out passes as it does about the individuals who recieve them.

 

Lyndalou on your last point about females and the condition, I fully understand and support your position. Who is to say that we might have the whole picture of AS distorted simply because the starting point might have been predominantly a collection of boys interacting in front of an individual called Hans Asperger. Concepts are built on previous knowledge and experiences. Whilst these evolve it does not mean we have the picture right or even slightly close, rather it might be we are taking small steps to a complete understanding. Very often 'experts' can be so close they can't get a real perspective on the reality.

 

To give what I feel is a very good example. My all time hero is Leonardo Da Vinci. Interestingly scientists worked for centuries trying to understand how the human heart worked and importantly in trying to construct an artificial heart in the last century. Thousands of hours went into this activity with little success. Once they had eventually understood the concepts of valves, chamber volumes and pressures and importantly circulation flow patterns they managed to come up with something which more or less worked. I guess they were very pleased with themselves. It was only at this point that they went back to some sketches and notes which they had been aware of for many, many years by Da Vinci and re looked at them. What they suddenly realised was that all the answers they thought they had found were all laid out in front of them perfectly explained but you had to be prepared to read them for what they were. I guess they did not have a belief that Leonardo could find the answer to this question so many years before and so they didn't bother to look for them in his work.

 

Personally I am convinced we have not got the picture or the AS map right and if some of those mistakes relate to how we look at the condition in respect to females and importantly adult females we are a massive way off getting a valid picture. If getting a diagnosis as a female Lyndalou means weight is added to arguments for re assesing existing concepts I am all in favour of such actions. If I would have a concern it is with females being pushed into fitting concepts of Asperger's which might not be a good fit. The easy assumption is that possibly if the fit is difficult then maybe AS is not present as a condition. The more difficult but intelligent response might be to question is the mould we are trying to fit people into the right form in the first place.

 

At some point down the line we will get to an understanding of the Autistic Spectrum and the picture will be a lot clearer, how close we are to that I am not too sure. What I do know is that the experience of any individual who suspects they might have AS or the parents of such individuals are very important. For me these are pencil sketches of life and within them are the answers for everything we seek. Experts who ignore pencil sketches do so at great risk to thier own status and if they are not carefull they might reach a point where they get to an answer but then feel very foolish at the same time about all the evidence they decided to pass over along the process.

 

Just a few thoughts.

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Lancslad, your Da Vinci example is very interesting and when I've seen documentaries about the man I've often thought that he must have been way before his time. I think that he had no aversion to dissection if I remember rightly, at a time when people would normally not consider doing this? With his observational skills and his ability to 'think outside the box' he was an exceptional talent. I'm often so disappointed by people who believe themselves to be 'intelligent'. They seem to be blinded by their own self importance. Throw a little humility into the mix and better results can be achieved....or is that just me??

 

I think the reason professionals can miss key details is that they don't refer to the past as much as they ought to. There is a tendency to try to 'correct' mistakes without learning from them. I think too that professionals get stuck on the technology and medical 'advances' these days. They forget that 100 years ago, 1000 years ago there were professionals sitting there, thinking the same exact thing, feeling smug and loving themselves! You just have to read what ancient philosophers wrote to realise we're all just as deluded as we ever were....

 

Anyway, enough of that....

 

Thanks Lynne and for mentioning the Raeden Centre where my son was diagnosed. It was a terrible mistake to close such a resource. The Raeden Centre brought all the relevant professionals under one roof to observe and work with children referred for diagnostic assessment. Children were referred from over quite a large area in the North East of Scotland by their local health teams / Paediatricians and it made what could be an extremely stressful process a much more streamlined one. A timetable was drawn up prior to the visit so that all the relevant professionals were seen over the course of a week and there was ample time to ask questions about what was happening during each assessment stage. Between visits to OT, SALT, Psychologist, Eye Clinic and Audiology and even a music class, my son was given free play opportunities and used the soft play area so he could be observed at play. He ate his meals there so they could observe how he ate. The Ed Psych visited separately at home before the week long assessment. The place was already winding down when my son went there which is why he went into the day nursery to attend the music class as there were no other children in the assessment nursery for him to interact with.

 

This centre is now gone and the community-based assessment process is a dire alternative.

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Thanks Lyndalou and Lancslad for all your insightful comments, the process of obtaining an ASD diagnosis as an adult is an area in which there is virtually no research so hearing your first hand experiences is very informative. Lyndalou - even though you could not complete the survey I would like to include some of your comments in the project if possible? There has been quite a lot of work done with parents of children with ASD, which tends to show the situation regarding diagnosis and support is improving, in part due to a large increase in awareness of the condition. Unfortunately I am not sure the same can be said for adults.

 

Robert - this research is intended as a follow up to paper written in 1997 by Howlin and Moore called "Diagnosis in Autism: A Survey of Over 1200 Patients in the UK," which found that half of parents were dissatisfied with the process. They also wrote a paper in 1999 called "The diagnosis of Autism and Asperger Syndrome: findings from a survey of 770 families" which found that parents of children diagnosed with AS experienced longer delays in getting a diagnosis and were less satisfied with the process than parents of children who received an autism diagnosis. We will be comparing our results with the findings from these surveys to see if things have improved in the last 15 years. As it is an exploratory study of people's experiences we have not got a control group, but you do raise a valid point that this could be an interesting avenue for future research. Ideally we would compare it to another diagnosis that is quite subjective in which the outcome depends a lot on the particular views of the professional you see, alongside a condition which has much more clear-cut, biological diagnostic features that would be apparent on tests.

 

Our project has just begun but we would like to keep it running until we have similar large numbers of responses gained in the studies mentioned above. I realise the future of the term 'AS' is uncertain but this is part of the reason why I think research in this area is important. We hope to be be able to contribute to the debate concerning the diagnostic labels used in ASDs and also to the NICE guidelines that are currently being written concerning diagnosing ASDs in adults. The plan is indeed to publish it in a peer-reviewed journal in the future!

 

jlogan1 - if you have been through the diagnostic process three times for three different children then filling in your experiences for each one would be very helpful.

Edited by ASD_Diagnosis_Project

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Children with an ASD grow up into adults with an ASD.

 

But until recently, there were not even records kept anywhere of who those adults were.

 

And due to speech and language and social communication and anxiety issues, it is not surprising that many of those adults were not on anybodys register or radar.

 

A diagnoses is extremely important for children that then become adults that need to access things like their local GP and NHS services.

 

It is a huge worry to me [and many other parents] that my son will be effectively "invisible" within the system.

 

I don't know IF he will be capable of being independent as an adult. But I am very concerned that he could be on benefits, and that they could be stopped due to his inability to go in and see them, or jump through the multi-fold hoops that the benefit system involves. That could result in him losing benefits, becoming homeless - and still he would not be known to any agency as the vulnerable adult he will most definately be.

Edited by Sally44

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Thanks Lynne and for mentioning the Raeden Centre where my son was diagnosed. It was a terrible mistake to close such a resource. The Raeden Centre brought all the relevant professionals under one roof to observe and work with children referred for diagnostic assessment. Children were referred from over quite a large area in the North East of Scotland by their local health teams / Paediatricians and it made what could be an extremely stressful process a much more streamlined one. A timetable was drawn up prior to the visit so that all the relevant professionals were seen over the course of a week and there was ample time to ask questions about what was happening during each assessment stage. Between visits to OT, SALT, Psychologist, Eye Clinic and Audiology and even a music class, my son was given free play opportunities and used the soft play area so he could be observed at play. He ate his meals there so they could observe how he ate. The Ed Psych visited separately at home before the week long assessment. The place was already winding down when my son went there which is why he went into the day nursery to attend the music class as there were no other children in the assessment nursery for him to interact with.

 

This centre is now gone and the community-based assessment process is a dire alternative.

 

It's such a shame that they closed it. I know since we moved many people have said to me that they think it's a prime example of how a diagnosis should take place, not off the back of assessments in a pokey room.

 

Lynne x

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<Sings the Monty Python spam song>

recently diagnosed and not through the NHS who are a joke if you are an adult.

 

What is with all these students suddenly appearing and doing research. Has AS become "trendy"?

 

As the saying goes; '' follow the money '', for such interest to be taken all of a sudden, there has got to be money in it, research funds etc

 

 

But as an adult with AS experiences so far, well although I know it is that that causes my depression the medical services are no help what so ever with the AS, it is very much like being condemned.

 

And sadly, it is a killer for a lot of AS adults.

 

So wake up so called caring institutions, start caring.

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As to diagnostic experience I have to say my initial diagnosis was very good, it being performed by a private psychologist attached to a university for the purposes of weeding out dyslexia and other disorders but predominantly the former so that whatever aids are necessary can be provided for further education students. Where it degraded rapidly was when I took the diagnosis to my GP who was very disparaging about the psychologist and even said he will not recognise a private psychologist's report and I am to see the area NHS psychiatrist for a separate evaluation.

 

I turned up to see the psychiatrist who proceded for an hour to talk about golf after first discovering I have no interest in sport then said at the end of the hour, he believes I do have mild autism, how he arrived at that diagnosis is beyond me, but in his report I noticed he totally got my appearance wrong, and exaggerated about what I was wearing, saying I had turned up wearing a Peruvian poncho and a ten gallon stetson and there I understand why people become psychiatrists- to sort out their own issues, he was failing abysmally !

 

My GP was forced to concede but he was quick to tell me there is no help he can offer for my condition, no references to help organisations, nothing, but he will continue to prescribe for anxiety and depression with no talk therapy, of which I do understand NHS guidelines for treating depression is medication in conjunction with talk therapy.

 

I have also this year received a confirmation of my autism from a separate NHS psychiatrist who was 1000 % better than the well, whatever he was that saw me last at that facility.

 

Overall, I am not best pleased with what passes for medical service in my area, my GP I avoid and I have the impression that they believe me a problem customer and it is because of this, what help I need at the present I am not getting because the thought of going near my GP fills me with dread and I would rather wait until my mood improves before I think to go near that place anytime soon.

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Thanks for your input Sa Skimrande. Sorry to hear about your bad experiences with your GP. Part of the project is looking at whether there is a need to develop specialist mental health services that are specifically designed to help people with ASDs. I wondered if you (or anyone else) had any thoughts on this?

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