Finding someone to help with research into treatments

[squeeg]

Hi there,

 

I’m currently waiting for an ASD diagnosis on the NHS. I’m 28 and living with my parents living off savings as I’m unemployed and neither of my parents work and live off pensions. My whole life has been pretty joyless and unsuccessful so far.

 

In 2011 I was assessed with Weschler Adult Intelligence Scales and found to have:

* Verbal Comprehension: 96th centile

* Processing Speed: 4th centile, yes, 4th

* Perceptual Reasoning: 77th centile

 

In the US the have this term for people like me 2e, which stands for twice exceptional meaning presence of marked strengths as well as disabilities. I’m not sure I really like the term though because I don’t feel like there’s anything all that great about being the way I am: just very frustrating and confusing.

 

I’ve been seeing a psychologist privately for counseling and support who has reasonable working knowledge of learning difficulties and is going more deeply into an autism speciality. She is brilliant and very supportive and is very generous with her time and help.

 

Anyway I believe I have a range of overlapping disabilities of which autism is a part (dyslexia and ADD are also possibilities). What I want to do is do some detailed research into conditions and the treatments available on the market, with a very critical eye, to see if I can make some improvements to my processing speed and also my memory which is very bad.

 

So far I’ve had treatment for dyspraxia with one organization which was about 50% effective and I’ve also been doing brain training from BrainHQ which made some things better and others worse! Clearly there are things out there that do stuff so I am encouraged by that and of the research I’ve done there are loads of different treatments available but it has to be done carefully with all the appropriate information and facts and you can’t really trust the providers of the treatments.

 

The problem I have is that I can‘t really do the research myself because I’m too slow, forgetful, and I get stuck. I have a little bit of money so I’ve put some ads on job sites to try to find someone who would help me with the research.

 

Guess I’m posting here to see if anyone else has tried to do this sort of thing before or if anyone has any ideas where I might be able to find someone to help me with this research or any general thoughts. Anything will be appreciated.

 

[Special_talent123]

The wechler test is whether u have an intellectual disability... I scored below 70 which meant I felt straight into learning disability criteria

[Special_talent123]

I have Irlen with my dyspraxia and autism, you will be surprised what u find its a long term problem and my colour changes over six months so got another one again

[squeeg]

Thank you for that Special Talent. Incidentally I just read on Wikipedia that you can get vision therapy to help with Irlen to make it so that you see well without any colors.

 

That 4th centile score on processing speed worked out at IQ 74. Overall IQ was 111 but my therapist explained that number is basically useless as a metric of my ability because my intelligence is much more polarized.

Edited October 14, 2014 by squeeg

[Special_talent123]

I wouldn't trust that, as it's not a eye problem it's visual perceptual disorder its a brain problem . Irlen filters help my Irlen syndrome.

[dotmarsdotcom]

I love the saying you mentioned "twice exceptional" squeeg.

 

I wish they had that saying over here in the uk.

 

I also relate to your total joyless sense of feeling.

 

i feel like that too often :-(

 

it doesn't matter what I do for people, I feel I'm not good enough :-(

[squeeg]

 

I love the saying you mentioned "twice exceptional" squeeg.

 

Google it. There’s quite a bit about it. Are you saying you think you might be 2e?

[dotmarsdotcom]

it's a difficult tag to own isn't that squeeg?

 

I swear I'd never heard it being called that before your mentioning it.

 

so thanks for that.. i'm gonna bring that saying up when my grandkids do their "stuff" :-)

 

re: me being twice exceptional

 

if I am.. I wish it would mean I'd have more mates and more family want to come over and hang out.

 

if I am twice exceptional it doesn't really seemed to of helped me socially :-(

[squeeg]

I swear I'd never heard it being called that before your mentioning it.

 

When you say "it" are you referring to ASD/Aspergers? Because only a very small minority of those with ASD/Aspergers would qualify as 2e although AFAIK there’s no official line for what qualifies as 2e or not.

 

If you are 2e you should have something that you are really good at such as maths or musical skills. Although your ability could be somewhat hidden due to learning difficulties that overlay. Not quite sure what mind is some kind of conceptual reasoning / ability to find insights. Although I don’t really know if I qualify but I did email someone who runs a 2e school in America and he agreed I "fit the profile".

 

I don’t actually like the term very much personally because on first impression it sound like you think you are really really awesome. I would prefer gifted and handicapped or something like that. Even then I’m not sure about the word gifted because I certainly don’t feel gifted. My life has been . I am good at coming up with insights but I don’t really remember them so I can’t integrate them together very well which makes the whole thing kind of pointless. I’m long term unemployed.

 

 

if I am twice exceptional it doesn't really seemed to of helped me socially :-(

 

You can absolutely have social difficulties and have a marked strength. I’m like that, I think. Also just because you fit a label doesn’t suddenly change your life although it might change what you think is possible. For me I lived most of my life thinking I was very clever and then not understanding why I struggled so much. When I got test results showing my appalling processing speed my response to that was to give up my plans to start a business and enroll on an art course which I then went on to fail and drop out of.

[squeeg]

Finally managed to track down a PDF I read on 2e that’s pretty good at describing the issues. I’d like to draw attention to this part:

 

Experts suggest that twice-exceptional students may be found in one of the following three categories (Baum, 1990):

• Formally identified as gifted but not having an identified disability—giftedness masks disability

• Formally identified as having a disability but not gifted—disability masks giftedness

• Not formally identified as gifted or disabled—components mask one another—giftedness and the dis-

ability not readily apparent.

 

You can read the whole thing here. I’d probably be the 2nd category.

Edited October 18, 2014 by squeeg

[trekster]

Omega 3s csn help with brain function being off gluten and dairy also helps with my functioning. I also recommend the irlen/colorimeter system.

[squeeg]

 

 

gluten and dairy also helps with my functioning

Came back here to say this. I've been off gluten and casein for 6 weeks now and noticed definite improvements. Since I was having a diet heavy in gluten and casein I've seen a change from being near useless to now functioning pretty well. There's a really definitive study on this diet that says it doesn't work but the whole study is completely ill-founded because none of the kids on it are actually gluten and casein free for any longer than 4 weeks and improvements in other studies are shown to build slowly over course of a year.

 

I'm seeing a nutritional therapist soon to try to heal my leaky gut and find other food intolerances. I also found I had candida overgrowth and have been trying to kill that off with coconut oil and one dose of thrush medication. There's also some stuff saying autistics are vitamin B12 deficient and need to have injections for it.

[Mihaela]

 

I'm seeing a nutritional therapist soon to try to heal my leaky gut and find other food intolerances. I also found I had candida overgrowth and have been trying to kill that off with coconut oil and one dose of thrush medication. There's also some stuff saying autistics are vitamin B12 deficient and need to have injections for it.

 

 

Interesting. I've been virtually vegan for decades now, I never touch animal milk, and only rarely eat cheese and eggs. I have regular blood tests and I have no B12 deficiency, although a while ago I had a folic acid deficiency, but that was my own fault. I feared that fresh vegetables were too expensive. I was put on folic acid tablets, and now I'm eating a lot more fresh vegetables. I'm physically very fit (apart from occasional chronic back pain that I've had since my teens) and do a lot of walking.

 

I eat a muffin or piece of toast with yeast extract every day which gives me all the B12 I need.

[squeeg]

only rarely eat cheese and eggs

 

One thing that flawed study on gluten and casein free diet does prove is that you have to be strict on it for a long time for it to work. My belief is that the peptides from gluten and casein that disrupt brain function are only removed very slowly so if you are putting more in at any point you set that process back significantly. There's no casein in eggs so I'm eating plenty of eggs but I'm certainly not eating any cheese.

 

 

 

I have regular blood tests and I have no B12 deficiency

 

Where do you go to get those?

Edited December 24, 2014 by squeeg

[Mihaela]

I'm no expert on nutrition really, but I feel I instinctively know what's good for me. I only eat free-range eggs, and then very rarely.

I have a couple of blood tests a year. My GP arranges it.