Question for the people without a professional diagnoses.

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Reading over the last thread regarding self-diagnoses, I was curious as to why so many people go undiagnosed.

No answer that fits my situation; have two doctor's unofficial agreement that it is Occam's Diagnosis, but nothing official as they do not feel qualified to make an official diagnosis. Having one would not help me, as I am not seeking services for assistance; having the understanding has helped more than anything else I have tried in 30+ years.


M.

Theres a degree of politics involved. If you were to diagnose everyone then suddenly overnight you have a population with legitmate demands for service provision which local government or health authorities are poorly prepared for with already over streched provisions for other populations.

Its not too disimilair to why so many type 2 diabetics go undiagnosed until further complications are developed. Overnight if every type 2 diabetic in the UK was diagnosed you would suddenly have a huge chunk of the population entitled to benefits able to claim various medical interventions for free and it all costs £££££.

Also in the past there was a stigma against diagnosis in adulthood. But thankfully in the last decade that seems to be going away as there is greater recognition of the ways AS affects people in later life and a recognition that going undiagnosed in childhood can lead to unsuccesful transitions into adulthood. Again its a recognition over time by professionals banging away at government that when you mess up peoples lives and leave them dependent on support, social housing etc it costs far more £££ in the long run then if you nipped the problem in the bud in early childhood.

It's completly counter productive thinking. Short terms savings that future governments have to pay for and in the mean time the individual is the one who suffers a deterioration in their quality of life.

I was informally diagnosed by others in a nonclinical setting. To get a clinical diagnosis I would have to go out for it, pay for it, and possibly get other people involved with describing my childhood and I don't care to disturb them. It is unlikely that any financial benefits would come of having the paperwork as I can drive and hold a job. Having an official diagnosis somewhere that can be looked up might have negative employment and legal implications. It has no impact on medical treatment I am likely to receive, such as dental work, etc.

I can't pick anything from the choices above because none of them apply to me.

I haven't got a dx 'cause I'm biding my sweet ol' time. Oh and 'cause I only get up the courage to call the doctor when I'm drunk, and the surgery isn't open in the evenings

I am officially Autistic, but I can imagine that sb doesn't want to have paper. Because it doesn't give you any Mindreadmachine but can give sticker I am ret*d and dangerous, keep away. Some people prefer anonymous be.

I have papers and I'm ashamed to go for donation from school for disabled ones. My half-deaf friend hasn't this problem. But I don't want gossip she is mentally abnormal. So I understand these ones who don't want even diagnosis have.

What countries are people from?

You have to bare in mind each individual country will have a differnt approach to employment law and disability when I read this

This actually horrifies me. This is why I would never consider working in the US or australia as both countries seem to have an utterly appauling attitude to disability of any kind.

I actually gain rights if I declare to an employer during interview for a job that I have aspergers syndrome. They then have to show they have offered me reasonable adjustments under the disability discrimination act. Some jobs in the public sector also actively positively discriminate through garunteed employment schemes. This means by the very act of putting on the form I have a disability they will put me on an interview list.

IF I do not tell an employ about my diagnosis I loose my protection under the disability discrimination act and it becomes much harder to challenge an employer.

The problem with the discrimination act is the onus is on you as a person with AS to deciede how your employer can adjust the workplace to cater for your needs. I personally don't know how to help me, If I did I would have helped myself, written a book about it maybe gone around all the various autism conferances etc. Also some employers read the key word "reasonable" and think spending more than £1 extra on you is unreasonable.

I'm going off topic here though so i'll cease my rant here

Many people who grew up before Asperger's was a recognized part of the autistic spectrum are, because of their life long difficulties, either unemployed or under employed. That means no or limited health insurance.

My official diagnosis is actually helping me get employment and free camera gear from Canon.

Well, I made a failed attempt to get diagnosed on the NHS several years ago. I actually started trying to get some sort of mental diagnosis just over 10 years ago, without knowing what condition to go for. I didn't know about Asperger's then and hadn't considered autism in any way. I wondered about things like brain tumours, manic depression and early-onset Alzheimers etc etc etc but nothing seemed to fit properly. I asked the GP for a psychiatric referral. It ended up that I had several appointments with psychiatrists at my local hospital's mental health outpatients unit over a period of between 4 and 5 years but it was like having the same conversation over and over again, with none of the psychs having a clue about me or what condition(s) to investigate. Eventually, one of them decided to give me 2 referrals - one for psychometric testing at a learning disabilities unit in Bangor and the other for an EEG in Belfast City Hospital. By this time I had learnt about Asperger's, had considered it as a likely possibility for myself, and had declared that to the doctors. The psychometric testing was by a final year psychology student, who put me over the WAIS test over 2 appointments and then told me during the 3rd appointment that there was nothing wrong with me as the test results showed no evidence of a learning disability. I asked about Asperger's, which she had not mentioned, and she said that there would be more of a scatter pattern in the test results for Asperger's. I was left deflated, angry and without hope as I desparately needed an explanation for my life, both personally and as medical evidence for DDA because of problems at work.

As for the EEG, the junior psychiatrist told me that she now had a diagnosis for me - partial epilepsy. This diagnosis was made from the EEG report but without referring me to a neurologist. When I later made arrangements to see a neurologist specialising in epilepsy, he was suspicious of the diagnosis and he referred me for another EEG by his own staff at his hospital. He overturned the epilepsy diagnosis but I was still left in limbo with nothing diagnosed.

About a year and a half ago, I somehow had a sudden re-awakening of interest in Asperger's as a possible or likely explanation of my own life, personality and mind. I started buying books about it and joining FaceBook groups about it, which is how I found out about Wrong Planet. I started discussing it with a small number of colleagues at work, not realising that they had some knowledge of it themselves through people that they knew. I was given the name of a specialist private psychologist specialising in the autism spectrum. I decided that I would contact this psychologist but only after I had finished reading Attwood's Complete Guide. I went for a preliminary consultation with the private psychologist, who said that there was plenty of evidence of an ASD to make it worthwhile proceeding to a full assessment. I couldn't afford it myself but said that I would try to get my trade union to lean on my employer for the funding of an assessment. In reality, I found my union very unprepared to put up a fight against the firm.

Last July, I went back to a GP to ask for a referral to a specialist autism unit that I had found out about. I had a "gatekeeper" appointment at my local hospital in September and managed to get past the gatekeeper and thus referred to the autism unit.

I had a 3-hour assessment with the autism unit earlier this week. They are satisfied that there is a lot of evidence of an ASD but they are not finished yet. I need a follow-up appointment and they also need to hear someone else's perspective of me before giving me a diagnosis.

Other - I am pursuing a diagnosis and it's just taking forever.

It's expensive, and I won't have much money for too much therapy, unfortunately, since I could use it. But, I'm in a similar situation, I have an appointment for assessment, it's just that the next available appointment wasn't until June. Though the symptom list seems to answer so many questions and I'm pretty sure I have it, I would like a professional to rule out other possibilities. So, I wouldn't say I'm self-diagnosed, I just suspect and have to wait in a really long line.

While there are protections for "disabled people" in America, Canada, and Austrailia in regards to employment, there is still a catch-22.

In Human Resources, there is a phrase called "Bona Fide Occupational Requirement" in which it would be acceptable to discriminate against a person with a disability if their disability would prevent them from performing the job to an acceptable level. This is probably true in the UK as well.

The problem is, exactly what can a company claim as a BFOR and how they could defend it in court.

Many jobs list the job requirements right on the job notice. By far, the most common trait that they are looking for is "Excellent Interpersonal Skills". Right after that? "Excellent Oral and Written Communication Skills". You see the problem here?

Depending on the degree of specialized skill required for the job, BFORs can either be very specific or very vague. In more egalitarian or high-skill environments, BFORs might be more specifically related to task, and not personality characteristics (like many low-skill, customer service jobs are).

The bottom line is that staffing managers want to eliminate as many unqualified people as possible before getting to the "qualified" candidates. If you are disclosing a disability that effectively states that you are in violation of a BFOR, you would only be considered if the employer were either knowledgeable and sympathetic about these complications (rare) or if they had an ulterior motive for hiring more disabled people.

You've essentially stated that you AREN'T a people person and you may have difficulty communicating. If you were to take an employer to court because they denied you a customer service job, they would probably win. Because they can argue that "Excellent people skills" are an essential part of the job.

That's the thing with Employment Equity. It's meant to give a leg-up to members of disadvantaged groups that are deemed to be qualified. If they are deemed to be unqualified (either due to BFOR violation or lack of education/experience), the employer is under no obligation to give them an interview, let alone hire them.

That concludes the disclosure problem in employment.

I am living in the US without any kind of health insurance. I cannot afford to get a diagnosis. It's frustrating. I only work part time. Its hard finding jobs when most of them rely on good customer service and you have a hard time with interviews. Things seem like they would be a lot easier for me if I could tell people what my problem is and apologise instead of them assuming that I am being disrespectful or weird.

Unfortunately I can't choose multiple poll options. I'm not currently pursuing a diagnosis both because cost is an issue and because I'm not sure what a diagnosis would gain me that would offset the fact that I would have to go talk to a stranger to get one. I even asked about this last factor in my introductory thread but didn't get a lot of response.

I'm just now figuring things out, so it was more of an understanding thing. I'm pursuing the differnt avenues for diagnosis now, but who knows how long it will take. It was pretty much a forced hand which had me seek professional help which led to where I am now. It wasn't until I started seeing a Professional and then finding out that my Uncle was diagnosed, that I was told that Asperger's has been both my gift and my curse throughout my life.

Of course, what does getting officially diagnosed actually mean? Do you fall within the DSM? Yes, ok you got it!