When disability support claim you don't have Autism

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Wandering_Stranger
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13 Apr 2013, 11:31 am

Eurgh, not this again. :roll:

I had a meeting on Tuesday with my support worker and Disability Support to see what help they could give me if I was to return to college.

In her opinion (she's met me before) I can't possibly be Autistic. Her reasons? I am nothing like her father who might be on the spectrum and because I don't have a proper diagnosis, which apparently means I don't have it. The psychiatrist didn't actually write in his letter to my GP that I don't have Autism. He said he wasn't 100% sure, which I and my parents took as "I can't really say yes or no". I can think of many people on the spectrum I've met that I'm nothing like. Oh, and I'm female. Apparently, we're affected differently to males on the spectrum. (not sure how; but I have been told many times men & women on the spectrum are different)

There are many people (including my own parents and a relative who is about to graduate with a psychology degree) who disagree with her. They can actually state why which doesn't involve "because I know someone with it and you're nothing like them." My dad even said (I agree with him) that I'm nothing like my brother who is on the spectrum; but it's clear to him that we both have Autism. To make it worse, my support worker (who has known me for 4 months and I've met 4-5 times) agrees with her. :x They both want me to go to counselling to deal with my non-existent issues.

I now have a few big problems:
- until I can actually prove that I'm Autistic, (I'm not sure a letter from my sister stating she has a degree in psychology and knows me well enough, would be enough) I can't get help. There's no help for diagnosing adults where I am. We just get sent to mental health services who can't diagnose us and then we're discharged and left to deal with it by ourselves.
- I need this qualification and despite me living in a big city, it's the only further education college in this city.

This is the second time she's done this. The first time, she dismissed a letter from my ophthalmologist and decided that I was Dyslexic. :roll: The evidence was a screening test for Dyslexia. The screening test (which is computer based) doesn't take into account other disabilities. My GP wasn't happy that she had to write a letter which backed up the letter from my ophthalmologist, (it's a form the ophthalmologist fills in to say that they believe I'm partially sighted) which they reluctantly accepted.

The college are meant to be running an Autism course. A group of us from the local branch (which I shouldn't be attending according to SW and the other woman) want to go along to see what they get wrong.

So, it looks like I am going to have to talk someone into coming to the doctors with me to push for a referral for a diagnosis.



Fnord
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13 Apr 2013, 11:48 am

Wandering_Stranger wrote:
... I don't have a proper diagnosis, which apparently means I don't have it ... So, it looks like I am going to have to talk someone into coming to the doctors with me to push for a referral for a diagnosis.

Capital idea! Try to get referred to an appropriately-trained and licensed mental health professional. Only such a professional can give you a proper diagnosis that will be recognized as a disability.

Anyone can walk into an office and say, "I have a disability", but only those who can prove an official diagnosis will get the benefits.



Wandering_Stranger
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13 Apr 2013, 12:11 pm

Fnord wrote:
Wandering_Stranger wrote:
... I don't have a proper diagnosis, which apparently means I don't have it ... So, it looks like I am going to have to talk someone into coming to the doctors with me to push for a referral for a diagnosis.

Capital idea! Try to get referred to an appropriately-trained and licensed mental health professional. Only such a professional can give you a proper diagnosis that will be recognized as a disability.

Anyone can walk into an office and say, "I have a disability", but only those who can prove an official diagnosis will get the benefits.


These are the only people who have decided that because I don't have a proper diagnosis, I don't have it. I receive disability benefits and on one of the letters from them, they have accepted Autism as one of my disabilities. Oh, and they've never met me. They've gone on letters from my GP, a form they sent my GP and information from me.

As mentioned, there are no services at all for adults. We're sent to the mental health team (because of some stupid rule, anyone with an IQ over 70 is classed as mental health and not learning disability) who aren't qualified to deal with us. And I can't afford to go private. Many places don't accept a private diagnosis either.

I have also diagnosed sensory issues, which they've dismissed. :x



AardvarkGoodSwimmer
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13 Apr 2013, 1:24 pm

Absolutely outrageous. To say you're not on the spectrum because you're not like her father. And this is a person in any kind of professional capacity. Wow.

And it sounds like you have engaged in good, patient step-by-step self advocacy. Please keep engaging in good, patient step-by-step self advocacy. Exploding at them or trying to disprove them on specific steps is probably not a strategic move. If you do make a misstep, just excuse yourself and regroup, and then keep asking for what you need for your life to go well, as well for you to be able to help others.

They definitely can and should accommodate you on sensory issues. As far as social skills training, what I've heard, I'm just not that impressed so far, but there might be some good skills training out there.

Maybe when the psychiatrist said can't be 100% sure, he or she may have meant somewhere in the neighborhood of 80% sure. Or not, I guess it depends on the psychiatrist.



Wandering_Stranger
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13 Apr 2013, 3:51 pm

AardvarkGoodSwimmer wrote:
Absolutely outrageous. To say you're not on the spectrum because you're not like her father. And this is a person in any kind of professional capacity. Wow.


My dad said he'd love to know what qualifications she has. I'd love to know too. She thinks her father has Aspergers - in my paperwork from the hospital, it just says Autism. I think Aspergers was mentioned; but I can't remember.

Quote:
And it sounds like you have engaged in good, patient step-by-step self advocacy. Please keep engaging in good, patient step-by-step self advocacy. Exploding at them or trying to disprove them on specific steps is probably not a strategic move. If you do make a misstep, just excuse yourself and regroup, and then keep asking for what you need for your life to go well, as well for you to be able to help others.


Thank you :) One issue I have is that I can't explain myself, or make it clear what I need and why, which hasn't helped me at all. It did start off as being curious as to whether I had it or not. Now, it's because I need help.

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They definitely can and should accommodate you on sensory issues. As far as social skills training, what I've heard, I'm just not that impressed so far, but there might be some good skills training out there.


There are acts to place to force them to do this. They can't justify why they can't carry out the adjustments I need. Whenever money comes into it, (such as for coloured paper) I'm always told to use my benefits. They don't go that far and at times, my costs are in excess of the amount of money I receive. To make it worse, one recommendation was done via a test they did for me years ago. :roll: And they've overridden the decision made by 2 different assessors and are unable to justify their reason for it. Well, they argued I could just use the aids I have. Except, they don't and never will remove the need for help from another person.

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Maybe when the psychiatrist said can't be 100% sure, he or she may have meant somewhere in the neighborhood of 80% sure. Or not, I guess it depends on the psychiatrist.


I can't quite remember what he said. From the start, him and GP both said I'd be harder to test due to my other disabilities. He thinks I'm on the spectrum somewhere; but the tests he carried out haven't been that conclusive. However, he can't rule out the possibility I've got it.



MindBlind
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14 Apr 2013, 5:35 pm

That's of unprofessional to use personal anecdotes as evidence of something. If you meet the criteria, you're probably on the spectrum. Your psychologist s still assessing you, am I correct? If that's the case, it's very premature to decide whether you definitely do or definitely don't have a disability. You clearly have needs that must be met and they really need to get their act together.

They're not going to take your relative's assessment of you seriously because they're a relative, but their testimony might be very valuable. Plus, their knowledge of the condition might be important too.

Please persist and try to get an autism assessment. It's their job to help you - you just need to remind them is all.



Ettina
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14 Apr 2013, 10:43 pm

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The first time, she dismissed a letter from my ophthalmologist and decided that I was Dyslexic. The evidence was a screening test for Dyslexia.


I doubt getting reassessed for autism will help, then. She's clearly just incompetent. My advice is to go to her higher-ups and complain.



thewhitrbbit
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14 Apr 2013, 11:27 pm

I am familiar with college disability support, and unfortunately, no diagnosis, no go. We are very strict about requiring a diagnosis. Otherwise, any student could walk in and get accommodations. And trust me, they would try.

We can refer students for outside testing, but we don't provide funding or make appointments for testing either, it's impossibly expensive.

I can also understand why they would refuse a letter from your opthomoglist. He/she is not trained to diagnose learning disabilities. We will not accept letters from family doctors either.

It sucks, but the process has to be fair so everyone has to show documentation.

I do think her comment about your family was inappropriate.



Wandering_Stranger
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15 Apr 2013, 10:22 am

MindBlind wrote:
That's of unprofessional to use personal anecdotes as evidence of something. If you meet the criteria, you're probably on the spectrum. Your psychologist s still assessing you, am I correct? If that's the case, it's very premature to decide whether you definitely do or definitely don't have a disability. You clearly have needs that must be met and they really need to get their act together.


No he's not. He discharged me 11 months ago. I had 2 meetings with him and had to bring my mum along the second time.

I do meet the criteria for a diagnosis of some sort and have done the AQ test many times and my score is high enough to suggest that I have Autism.



AardvarkGoodSwimmer
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15 Apr 2013, 11:37 am

Hi, I've had the beginnings of success starting my disclosure that I'm on the Spectrum with, "I have sensory issues and processing issues." At what I call 'MegaMart' where I currently work, the main manager and three different night managers like me, although other managers and supervisors perhaps not so much, and that's okay.

When you say you are partially sighted, can you please explain a little more what you mean? I know Temple Grandin has talked about some people on the spectrum perceiving vision almost like it's cubist or pointillist paintings.

================

Okay, as far as negotiation, in his book "You Can Negotiate Anything" Herb Cohen says good negotiation is often having someone else negotiate on your behalf. And I feel comfortable extending this to having someone else present with me.

Doesn't mean I'm not a good negotiator (and no crime if I'm not). It's just that this itself is a good way to negotiate. And the person with me can also act as a fair witness, and then the other person is more likely to be on his or her best behavior.



Wandering_Stranger
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16 Apr 2013, 7:16 am

AardvarkGoodSwimmer wrote:

When you say you are partially sighted, can you please explain a little more what you mean? I know Temple Grandin has talked about some people on the spectrum perceiving vision almost like it's cubist or pointillist paintings.


Basically, I was born with 2 eye conditions which affect what and how much I can see. My vision is severe enough for me to be refused a driving licence; but isn't severe enough for me to classed as blind. I have some useful sight; but the 2 conditions I have (which mean I'm colour blind, have vision worse than normal and can't read standard size print) make seeing very difficult.



AardvarkGoodSwimmer
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17 Apr 2013, 6:25 pm

Okay, yes, I can certainly see how difficulty reading print can make school work difficult. And there might be clever ways around this, for example, the library machine which enlarges print. But . . . it might be the 4th, 5th, or 6th thing which really works and really starts to make a big difference. And all the more reason to have a support person who wants to work with you and wants you to succeed. Which we should have, both formally within colleges and with our own groups.*

I'm not as familiar with color blindness. I know my sister's (soon to be) ex-husband is relatively color blind between red and orange. If there's a flashing traffic light, he assumes it's a red light and goes ahead and stops for it, unless he's very familar with the intersection. Of course, a stop not expected by other motorists, even a slow stop with flashing the brake lights, can have its own dangers.

*I'm kind of gathering that you might live in the UK? And I'm glad you're going to your group even though it sounds like that one person doesn't want you to.



Wandering_Stranger
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18 Apr 2013, 2:05 pm

thewhitrbbit wrote:
I am familiar with college disability support, and unfortunately, no diagnosis, no go. We are very strict about requiring a diagnosis. Otherwise, any student could walk in and get accommodations. And trust me, they would try.


Except, I can provide evidence that there's a high chance I'm on the spectrum. They have no such evidence which says I'm not. Oh, and one of the pieces of evidence, a qualified teachers (for Irlnes Syndrome) did the test for me. Yet, they won't except that. :x

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I can also understand why they would refuse a letter from your opthomoglist. He/she is not trained to diagnose learning disabilities. We will not accept letters from family doctors either.


You have missed my point. She claimed I'm not sight impaired and am Dyslexic. My ophthalmologist claims (and has years of evidence to back this up) claims my sight is severe enough for me to be registered as partially sighted and that my reading issues (which led them to diagnose me with Dyslexia) are related to my sight. There is no evidence at all that I'm Dyslexic; but there's a lot of evidence ( roughly 17 years worth) to say that I'm sight impaired.

I was talking to a friend on Tuesday. I'm not the only one whose had issues with this college and Autism. There's a high chance her daughter is on the spectrum and her college tutor claims she's not because "I've got it and I'm nothing like you". :roll:



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18 Apr 2013, 3:19 pm

Unfortunately, Wonderstranger, you're out of luck. Unless you have a formal diagnosis, which according to what you've said you don't have, then there are no benefits you would qualify for. If you disagree with your specialists conclusions, my only suggestion is to see another specialist who would be more inclined to diagnose you on the spectrum.

I also want to add too, with the new DSM criterion, which has been designed to make it more difficult for undiagnosed Aspies to receive an official diagnosis, it will be much harder for you than before to receive the recognition you deserve.



hblu1992
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18 Apr 2013, 3:58 pm

Disraeli wrote:
Unfortunately, Wonderstranger, you're out of luck. Unless you have a formal diagnosis, which according to what you've said you don't have, then there are no benefits you would qualify for.


you cannot legally be given any benifits or services without an official formal diagnosis.No one can, it is illegal.If they did and someone caught them they would be fired and you would be expelled for academic dishonesty.

If it isnt formal it doesnt exist for the schools purposes



Wandering_Stranger
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18 Apr 2013, 4:15 pm

I have managed to get benefits without an official diagnosis.

Why does the diagnosis matter anyway? Surely, if I've got needs, they have to legally meet them, as per the Equalities Act 2010. Currently, they won't meet any of my needs because of supposedly of lack of money and because they've decided in their opinion that I can't possibly be Autistic. Yet, they have no evidence that I don't have it and they're not even qualified to dispute whether I've got it or not.