Failed ASD assessment - need a second opinion

Thanks for the book recommnedation - Ill check if its available in the library 

NAS18906 said:

[quote][/quote]

It just goes to show that only you know yourself.

This is, absolutely, the crux of dealing with autism. It may be that telling other people will be of less benefit than understanding yourself.

Have you come across this book www.amazon.co.uk/.../1606236342 ? I found this book when I first suspected that I had Aspergers. It did two things for me

a) it confirmed that I was on the right track. There are sections that describe how we think and it rang so many bells for me.

b) It gives some practical ways to approach life with the problem.

I have recommended it a few times on the forum and a people have then taken the recommendation and then recommended it themselves.

I lived for 56 years without suspecting that I was different (shows lack of insight!) and I am aware that for many people it is an absolutely invisible condition. It is hard to explain to people - except to other people who have struggled with the same problem.

Thanks for that - I shall fight to "infinity and beyond" to get that second opinion even if it means going privately. 

Can anyone recommend and good IT companies which are autistic friendly (if people are allowed to give names on here without breaking rules) or is it better starting another thread on it ? 

Anonymous said:

It's not just getting an IT job that will help. Try working in an IT company!

I work for an IT company and I reckon half the people here are somewhere on the autistic spectrum. It was a long time coming to get my diagnosis as my GP was reluctant for a good few years to refer me but I fanially persuaded her and having the diagnosis helps me understand myself a lot more.

When I have worked outside of the IT industry it has been much harder.

Anyway, I digress (I do that a lot), get that second opinion.

It's not just getting an IT job that will help. Try working in an IT company!

I work for an IT company and I reckon half the people here are somewhere on the autistic spectrum. It was a long time coming to get my diagnosis as my GP was reluctant for a good few years to refer me but I fanially persuaded her and having the diagnosis helps me understand myself a lot more.

When I have worked outside of the IT industry it has been much harder.

Anyway, I digress (I do that a lot), get that second opinion.

rk1103 said:

It just goes to show that only you know yourself.

This is, absolutely, the crux of dealing with autism. It may be that telling other people will be of less benefit than understanding yourself.

Have you come across this book www.amazon.co.uk/.../1606236342 ? I found this book when I first suspected that I had Aspergers. It did two things for me

a) it confirmed that I was on the right track. There are sections that describe how we think and it rang so many bells for me.

b) It gives some practical ways to approach life with the problem.

I have recommended it a few times on the forum and a people have then taken the recommendation and then recommended it themselves.

I lived for 56 years without suspecting that I was different (shows lack of insight!) and I am aware that for many people it is an absolutely invisible condition. It is hard to explain to people - except to other people who have struggled with the same problem.

NAS18906 said:

A score of 32 is quite a common score on the forum for people who are diagnosed or who are in no doubt about their traits. It is a long way from 'normal'.

Given that there are no physical scientific tests (e.g. blood tests, x-rays or similar) for conditions like this it is not unreasonable for people (even experts or experienced therapists etc) to have real difficulty in identifying one mental health condition from another. In mental health, it is common to arrive at a conclusion by trial and error. If the teratment is bringing a good benefit then the expert's opinion is right enough and if the patient is not reponding to treatment then they should look for another cause. There are lots of people who have eventually arrived at a diagnosis of ASD after being diagnosed with borderline personality disorder, bipolar etc etc.

If I were you I would take the possibility of ASD seriously and learn about it and also learn about CBT in the light of your understanding of yourself.

The three strands that I have for dealing with this myself are

1) educate myself about myself. Understand who I am, understand how autism nudges me in certain directions but also remember that I have other traits that are not affected.

2) train myself to accomodate some of the problems that autism gives me. This means making extra efforts to be patient with myself and others, use situations to study how I behave and how other people behave, avoid jumping to conclusions, avoid being judgemental, strive to understand how to make situations work rather than looking for reasons why they might fail. Some autistic people can really benefit from social skills training.

3) treat myself for the consequential problems. Autism leads to a traumatic life and that can lead to SAD, anxiety depression etc. Try and nurse yourself and encourage yourself to get through it in the light of the knowledge that you can gain about how you work and why things might have gone wrong previously.

With regards to employment. I am trying to figure this out for myself at the moment but I have spent most of my working life in employment but have had continuous issues in work. Now that I have a diagnosis, I am trying to rebuild what remains of my career. Employers know very very little about how to deal with someone with autism. There are training courses and there are more and less intelligent employers. My current aim is to find a more 'engineering' type employer where my tendencies for accuracy, rigour etc are more appreciated. My previous employer was chaotic and there was very little documentation (having things in writing is widely understood to help people with autism). I have learnt that I need to investigate the employers culture before accepting any job offer.

Disclosure is a question that is not easy. When I was first diagnosed, I told all of my work colleagues. This generally went down well but they were a set of highly educated IT people, half of whom knew of someone on the spectrum. In general I am learning to disclose it to fewer people as I go on - most people just don't know what it means and it is of no benefit to them or you to disclose this. It can lead to bad reactions as some people are prejudiced and ignorant - it depends on so many things that you have to make a judgement on an individual basis.

I see what your saying but I am finding the negative diagnosis difficult to take and its getting me depressed. My perfectionist atttitude and OCD doesn't help either as its difficult to stop thinking about it. I feel Im stuck between a rock and a hard place - I can't tell people i have ASD or even attend ASD friendly events like the National Autistic Scoiety organises as they are likely going to ask for proof of diagnosis. Also, people around me would never think I have it and aren't particularly supportive - I would come across as trying to gain attention... this is how well I have managed to mask it. Given that I have been in very demanding jobs (scientific research) previously , Im amazed as to how Ive managed to last this long before going nuts. On he flip side, I can't just remove the notion of ASD from my head as my gut instinct is normally accurate - especially about what I am experiencing. 

Its not only this but forming any relationships has been a problem - i dont have any friends and I feel at ease just sitting in a darkened room doing reptetive things .... which is probably why I have become naturally drawn to the IT sector. Marriage - well thats totally out of the question, Im not sure Ive even spoken to anyone of the opposite sex in a social setting. 

Its quite ironic that as Ive been reading more about ASD on here and elsewhere, Im learning to cope much better than all the advice and pointless irrleevant counselling that GPs and so called 'health professionals' offer. It just goes to show that only you know yourself. Im suprised that there hasn't been more advancement in the use of fmri for scanning brains of potential ASD patients - it could be a useful physicial scientific test in addition to the other assessment available (although I do find these very subjective and pretty much a hit or miss).  

A score of 32 is quite a common score on the forum for people who are diagnosed or who are in no doubt about their traits. It is a long way from 'normal'.

Given that there are no physical scientific tests (e.g. blood tests, x-rays or similar) for conditions like this it is not unreasonable for people (even experts or experienced therapists etc) to have real difficulty in identifying one mental health condition from another. In mental health, it is common to arrive at a conclusion by trial and error. If the teratment is bringing a good benefit then the expert's opinion is right enough and if the patient is not reponding to treatment then they should look for another cause. There are lots of people who have eventually arrived at a diagnosis of ASD after being diagnosed with borderline personality disorder, bipolar etc etc.

If I were you I would take the possibility of ASD seriously and learn about it and also learn about CBT in the light of your understanding of yourself.

The three strands that I have for dealing with this myself are

1) educate myself about myself. Understand who I am, understand how autism nudges me in certain directions but also remember that I have other traits that are not affected.

2) train myself to accomodate some of the problems that autism gives me. This means making extra efforts to be patient with myself and others, use situations to study how I behave and how other people behave, avoid jumping to conclusions, avoid being judgemental, strive to understand how to make situations work rather than looking for reasons why they might fail. Some autistic people can really benefit from social skills training.

3) treat myself for the consequential problems. Autism leads to a traumatic life and that can lead to SAD, anxiety depression etc. Try and nurse yourself and encourage yourself to get through it in the light of the knowledge that you can gain about how you work and why things might have gone wrong previously.

With regards to employment. I am trying to figure this out for myself at the moment but I have spent most of my working life in employment but have had continuous issues in work. Now that I have a diagnosis, I am trying to rebuild what remains of my career. Employers know very very little about how to deal with someone with autism. There are training courses and there are more and less intelligent employers. My current aim is to find a more 'engineering' type employer where my tendencies for accuracy, rigour etc are more appreciated. My previous employer was chaotic and there was very little documentation (having things in writing is widely understood to help people with autism). I have learnt that I need to investigate the employers culture before accepting any job offer.

Disclosure is a question that is not easy. When I was first diagnosed, I told all of my work colleagues. This generally went down well but they were a set of highly educated IT people, half of whom knew of someone on the spectrum. In general I am learning to disclose it to fewer people as I go on - most people just don't know what it means and it is of no benefit to them or you to disclose this. It can lead to bad reactions as some people are prejudiced and ignorant - it depends on so many things that you have to make a judgement on an individual basis.

Martian Tom said:

[quote][/quote]

it is certainly not always an advantage to declare one's autism to potential employers as they may not understand it and may not know how to deal with it appropriately.

...or even if they do, or should!

I work as a support worker with people with special needs: autism, PMLD, etc.  Most of the colleagues I work with are highly-qualified and with years of experience.  When I got my diagnosis, I informed them at work because I felt it was the right thing to do, and in case I had some problems in the future.  I didn't think it would be an issue in such a place for reasonable adjustments to be made for me.

Generally, it's been okay.  But, as has become evident from many things I've been asked to do, I'm still expected to behave like an NT.  And certain colleagues have certainly become more 'distant' from me since they found out.  These, though, generally tend to be the ones who get impatient with the autistic clients when they behave autistically. 

I've recently applied for a job with a regional autistic trust.  I've declared in the application that I've been diagnosed with ASD.  I'll be interested to see if I get an interview...

Whats it like working in organisations with an understanding of autism ? Maybe I should be targetting similar places for jobs. Do you hae significant alteration to duties to suit your needs e.g avoiding customer/clients, public speaking, telephone conversation, multi-tasking, being amongst large groups of people etc  ?

So did you have to let your whole team know about your diagnosis or just your boss ? I don't understand why somethong like that could be kept confidential between you and your boss ? If you are asked to do something autism unfriendly, you could just say its not part of your duties (i do understand that there are nasty people in some companies but im assuming you disclosed your diagnosis after experiencing what type of colleagues you were working with ?)

NAS18906 said:

Social Anxiety and OCD are not always the product of ASD. There are people with SAD who do not have ASD and similarly with OCD. Have you tried the free online test aspergerstest.net/.../ which is quite good at differentiating ASD from other causes. I strongly suspect that you will score highly but please don't try and skew the test - this won't help anyone!

Getting a second opinion does not mean that you have to challenge, disprove or undermine the original diagnosis. It is a fresh look at you case with a fresh pair of eyes. Start by looking at www.nhs.uk/.../910.aspx and then also have a look at the search results that I posted earlier in this thread. A second opinion is not like an appeal under a judicial system, it is a fresh opinion from a different expert.

A diagnosis of ASD implies that one qualifies for protection under the equality act. This is equivalent to saying that you are disabled and this is a category that I do not 'enjoy' being in. The reality is that you have the issues that you have and you may benefit from this categorisation but almost nobody sees it as an advantage. There are firms that take part in the two ticks positive action scheme but I have not found this to be a significant help in my search for work in IT.

You may not need a diagnosis of full blown ASD to get the right support from your GP. The CBT that they prescribe may be tailored for someone with ASD but I get the impression that a good therapist will help someone with ASD regardless of their diagnosis status but there are lots of therapists who struggle to get through to anyone. It is a bit of a lottery and I think you have to approach it positively with an open mind if you are to get the benefit. CBT has been discussed on the forum before and there are people who have massively benefited and those that don't see the point.

I scored 32 on the aspergers test - which is on the cusp of borderline ASD and strong indication of ASD.... this is after being as conservative as possible i.e. downplaying a lot of my aspergers symptoms ! I remember doing a similar mutliple choice test (similar questions but not the same ones and i scored highly on them as well). 

But what you are describing is for someone who hasn't had an ASD diagnosis yet and 'may' be on the ASD spectrum. They aren' going to give me the ASD specific treatment as the psychologist has said I don't have ASD although he did seem confused himself regardig my awkwardness and conversational skills when he was explaining the results to me -  he ended up asking me if I thought it was social anxiety or ASD ..... I mean what the hell ??!!!I do not want to take treatment for things that are not relevant as sub consciously I will not be too engaged during the sessions. 

I do think having a ASD diagnosis is benefitial - you see a lot of people who get help from employers - there were some documentaries about this and awareness regarding autism is rising through events and national autistisc day etc. By law you are not required to disclose it if you don't want to - which at least gives the option of working at the company and seeing what the people are like and then disclosing later on. Also, surely that information would be confidential between you and your boss - so noone else would know about it. Why would he or she need to tell anyone else if it just involves alteration of duties - so you wouldn't necessarily have a 'disabled' tag ?

Social Anxiety and OCD are not always the product of ASD. There are people with SAD who do not have ASD and similarly with OCD. Have you tried the free online test aspergerstest.net/.../ which is quite good at differentiating ASD from other causes. I strongly suspect that you will score highly but please don't try and skew the test - this won't help anyone!

Getting a second opinion does not mean that you have to challenge, disprove or undermine the original diagnosis. It is a fresh look at you case with a fresh pair of eyes. Start by looking at www.nhs.uk/.../910.aspx and then also have a look at the search results that I posted earlier in this thread. A second opinion is not like an appeal under a judicial system, it is a fresh opinion from a different expert.

A diagnosis of ASD implies that one qualifies for protection under the equality act. This is equivalent to saying that you are disabled and this is a category that I do not 'enjoy' being in. The reality is that you have the issues that you have and you may benefit from this categorisation but almost nobody sees it as an advantage. There are firms that take part in the two ticks positive action scheme but I have not found this to be a significant help in my search for work in IT.

You may not need a diagnosis of full blown ASD to get the right support from your GP. The CBT that they prescribe may be tailored for someone with ASD but I get the impression that a good therapist will help someone with ASD regardless of their diagnosis status but there are lots of therapists who struggle to get through to anyone. It is a bit of a lottery and I think you have to approach it positively with an open mind if you are to get the benefit. CBT has been discussed on the forum before and there are people who have massively benefited and those that don't see the point.

NAS18906 said:

Hi rk1103,

Welcome to the forum. You have come to a good place - I suspect that you may well benefit from a diagnosis. You may well have enough autistic traits to give you a significant problem that needs to be addressed.

You have some strong views about a couple of things that may arise from the way your mind works. We suffer from "rigid" thinking and you need to be aware of this before sticking to a particular course that you have decided upon. We are not good listeners and I hope that you can listen to the thoughts i am going to challenge you with!

You are on meds and are refusing psychological intervention. This is in direct opposition to the current thinking on how you deal with autism. Psychological interventions can often fail and you have not benefited from these. Psychological interventions that take account of autism, and that are undertaken by a willing and engaged patient, are much more likely to succeed. Please open yourself to the possibility that a psychological intervention might be a good way forward.

You believe that a diagnosis will help you get a job. I wish this were true but I do not believe that this is the case. I have a diagnosis but have still got great difficulty in getting a new job. I have worked in IT for many years and have considerable experience of the problems that an autistic person can have in that career and also have experience of the almost total ignorance of autism in all of the firms I have worked in. I have tried declaring my autism to prospective employers (even ones that declare a positive benefit to disclosure) and have had no success with this. I have tried not-declaring and also have struggled. The key is to work out how to be good at interviews and to really understand what employers want. They do want people like us who can engage with the gritty detail of some jobs, they do want people who think differently, they do want people like us but we have to be able to sell the benfits without highlighting the difficulties. IT is a good career for people with autism but there are almost no employers who really understand autism and even fewer who are on the lookout for people like us.

Finally, a scond opinion can be obtained - have a look at the threads returned by this search community.autism.org.uk/.../"second opinion" and you will find a lot of examples of what to do and how people have engaged with the system - try to engage with the system rather than fighting the system! The benefit of a diagnosis is to get the right intervention - I really don't thionk that the protection of the equality act is worth a great deal for many people with autism.

Hi recombinantsocks,

Thanks for the suggestions. Psychological intervention helps if it deals with the problem in question ...... the problem I have is that because of my failed diagnosis, I will not be treated as an aspergers case so their approach to my problem will be different. I have had countless therapy sessions since the age of 15 or so (Im am 30 now) .....a lot of them speciifc to OCD as it has been a serious problem from the age of 8 when I was too young to understand what it was . Now I am better at dealing with that speciifc problem through experience rather than therapy. Social anxiety has been a problem all my life and so has depression but I have found meds help the latter to some extent (I have had severe reactions to meds in the past for which I couldn't take them). 

There are a lot of companies (a lot in the IT sector) which are autistic friendly - some of which give a guaranteed interview ...a believe autism is classified as a disability. Some companies also only hire candidates who have had a positive autism diagnosis. My background is in scientific research and have a keen interest in programming and anything with patterns/ number crunching etc - although I hate pulbic speaking and dealing with customers/clients or even speakig on the phone with people. In fact, people speaking in an open office environment would make me feel uncomfortable (I am more than happy to be locked up in a small side office and do work). Basically, what I am saying is that a positive diagnosis gives me the option of disclosing it if I think it would help ( a lot of it depends on the person employing you of course). At the moment, I do not have that option. I do not want to be 'labelled' as someone with autism but a positive diagnosis would give me a sense of relief and something else to fall back on. 

I didn't understand your last point - surely to get the appropriate treatment and support, I would need to have a positive diagnosis ?  The psychologist and GPs have now referred me back to the same type of treatment focussing on the problems that I have had addressed previosuly but have failed. It seems they have an unconsciouis bias with regards to th people they assess - i..e if they do not see the classic viusal autistic signs like shaking back and forth then one does not qualify even though one can score highly (overall) on all the tests. I just  got classified as someone who has a 'social anxiety' problem and not apsergers but isn't social anxiety a symptom of aspergers ? This is the problem with subjective assessmenets as its too dependent on the assessor - I am suprised there is no quantitative approach available through scanning ones brain for example. 

Martian Tom said:

Hi rk1103,

I'm sorry to read this.  I've also worked all of my life, have a degree, and have done public speaking and performance.  I got my diagnosis last year, though, in spite of these things - and taking due account of the fact that I've had to learn and adapt a great deal.  I've had years of depression and anxiety, though - and still get anxious now in any situation involving other people, even though I can manage them better than before.

Is there no way that you can challenge the decision directly with the assessors?  Are you able to lodge some form of appeal, backed up by your GP?  I got my initial referral via a psychological therapist I was seeing at the time, so I don't know if that gave any weight to it.

I'm sorry I can't be of more help - but yes, it does sound like the criteria they're using to 'clear' you is unfair.

Hi, 

Thanks for your message. Its been 5 months since I had the appointment so I think challenging the assssment now would be a bit late - besides I don't really want to go back to the same assessors again as their methodology and views about autism/aspergers in general seem to be very rigid (more a tick box exercise rather than treating it more on a per person basis). Im not sure Ill get another NHS referral through my GP given that the report wasn't a positive diagnosis. I guess my only hope is a private assessment if there is a chance I could do it without a GP referral- but thats going to be quite costly.  

rk1103

Hi rk1103,

Welcome to the forum. You have come to a good place - I suspect that you may well benefit from a diagnosis. You may well have enough autistic traits to give you a significant problem that needs to be addressed.

You have some strong views about a couple of things that may arise from the way your mind works. We suffer from "rigid" thinking and you need to be aware of this before sticking to a particular course that you have decided upon. We are not good listeners and I hope that you can listen to the thoughts i am going to challenge you with!

You are on meds and are refusing psychological intervention. This is in direct opposition to the current thinking on how you deal with autism. Psychological interventions can often fail and you have not benefited from these. Psychological interventions that take account of autism, and that are undertaken by a willing and engaged patient, are much more likely to succeed. Please open yourself to the possibility that a psychological intervention might be a good way forward.

You believe that a diagnosis will help you get a job. I wish this were true but I do not believe that this is the case. I have a diagnosis but have still got great difficulty in getting a new job. I have worked in IT for many years and have considerable experience of the problems that an autistic person can have in that career and also have experience of the almost total ignorance of autism in all of the firms I have worked in. I have tried declaring my autism to prospective employers (even ones that declare a positive benefit to disclosure) and have had no success with this. I have tried not-declaring and also have struggled. The key is to work out how to be good at interviews and to really understand what employers want. They do want people like us who can engage with the gritty detail of some jobs, they do want people who think differently, they do want people like us but we have to be able to sell the benfits without highlighting the difficulties. IT is a good career for people with autism but there are almost no employers who really understand autism and even fewer who are on the lookout for people like us.

Finally, a scond opinion can be obtained - have a look at the threads returned by this search community.autism.org.uk/.../"second opinion" and you will find a lot of examples of what to do and how people have engaged with the system - try to engage with the system rather than fighting the system! The benefit of a diagnosis is to get the right intervention - I really don't thionk that the protection of the equality act is worth a great deal for many people with autism.

learning difference said:

You may wish to consider the 2010 Equality Act Chapter 15.

A very interesting read. Particularly those definitions which may apply to you in the opening preamble.

Then ask yourself - do the definitions apply to me?

I advise you focus on your situation, not that of others.

You may then see the wood from the trees!

Good luck

Not really sure of the point you are trying to make with this. The OP may have enough problems that are causing significant problems to be worthy of having a label that can lead to treatment/intervention/training or that gives protection under the equality act. Whether he wants to wear that label in public is a completely different question - individual circumstances will lead to different decisions - it is certainly not always an advantage to declare one's autism to potential employers as they may not understand it and may not know how to deal with it appropriately.

You may wish to consider the 2010 Equality Act Chapter 15.

A very interesting read. Particularly those definitions which may apply to you in the opening preamble.

Then ask yourself - do the definitions apply to me?

I advise you focus on your situation, not that of others.

You may then see the wood from the trees!

Good luck