Page 1 of 2 [ 26 posts ]  Go to page 1, 2  Next

lundygirl
Veteran
Veteran

User avatar

Joined: 18 Mar 2012
Age: 55
Gender: Female
Posts: 853
Location: Dorset, UK

02 Apr 2012, 9:31 am

I'd really appreciate your comments please. I'm a 43 year old female and have been having therapy to deal with anxiety and depression. During this we explored the question of whether I am high functioning autistic. I'd done the online screening tests - AQ, EQ, etc plus the aspie quiz, and my results suggest that it's highly likely I am on the autistic spectrum/an aspie. This makes sense to me and answers a whole lot of questions I had about the way I am and the way I behave etc.

My therapist encouraged me to request a referral via my doctor, as I felt I needed to have a formal diagnosis - I'm the sort of person who needs answers! The referral went forward, but my doctor has just told me that the Community Adult Asperger's Team won't be pursuing it on the basis that I'm too high functioning and they cannot offer me any support services etc. The service is apparently vastly over-subscribed.

I'm now thoroughly confused, and also very upset. Does this mean they acknowledge that I am on the spectrum, but can't help me? Or that they think I'm wasting their time perhaps? Comments please.



Callista
Veteran
Veteran

User avatar

Joined: 3 Feb 2006
Age: 41
Gender: Female
Posts: 10,775
Location: Ohio, USA

02 Apr 2012, 9:34 am

Congratulations, you've just learned first-hand why functioning labels suck.

Either you're "too high-functioning" and don't need help, or you're "too low-functioning" and they think of you as basically incapable.

What it means, probably, is that the services they have are mostly things like adult day-care, things you don't need because you're independent. It's the typical gap: People who need a lot of help will get it; people who don't need much help won't. And then ironically it's the "high-functioning" people who are functioning worse, because the small things they'd need aren't available.


_________________
Reports from a Resident Alien:
http://chaoticidealism.livejournal.com

Autism Memorial:
http://autism-memorial.livejournal.com


EXPECIALLY
Veteran
Veteran

User avatar

Joined: 20 Oct 2011
Age: 40
Gender: Female
Posts: 701

02 Apr 2012, 9:40 am

This is why I don't see the point of getting the DX as an adult if you are a high-functioning Aspie.

and I'm not still sure not what's going to happen with the new DSM but as last I understood it, many of the "normal" Aspies here are going to instead be diagnosed with something called Social Communication Disorder because doctors are deicing they're too normal to have AS.

And I'm not sure what kind of services will be available with that diagnosis. Basically many adults have been DXed in the last few years, those services really are over subscribed, as they told you. The APA has said they believe many recent diagnoses to be questionable and want to narrow the criteria for this reason.


_________________
AD/HD BAP.

HDTV...

Whatever.


Alexender
Veteran
Veteran

User avatar

Joined: 2 Jan 2012
Age: 31
Gender: Male
Posts: 1,194
Location: wrongplanet

02 Apr 2012, 9:49 am

At 43 you have had many years to learn to adapt on your own. Because of this it was not evident that you could use some type of diagnosis.

So because you have learned to mask it that means it doesn't matter :roll:


_________________
www.wrongplanet.net


Kyra71
Raven
Raven

User avatar

Joined: 22 Feb 2012
Age: 52
Gender: Female
Posts: 117

02 Apr 2012, 10:08 am

Ahh I'm sorry that fell through... Good luck, I hope you can find the answers you seek elsewhere!



Last edited by Kyra71 on 03 Apr 2012, 9:18 am, edited 1 time in total.

lundygirl
Veteran
Veteran

User avatar

Joined: 18 Mar 2012
Age: 55
Gender: Female
Posts: 853
Location: Dorset, UK

02 Apr 2012, 10:11 am

Callista wrote:
Congratulations, you've just learned first-hand why functioning labels suck.

Either you're "too high-functioning" and don't need help, or you're "too low-functioning" and they think of you as basically incapable.

What it means, probably, is that the services they have are mostly things like adult day-care, things you don't need because you're independent. It's the typical gap: People who need a lot of help will get it; people who don't need much help won't. And then ironically it's the "high-functioning" people who are functioning worse, because the small things they'd need aren't available.


Thank you for the feedback, Callista. I suppose the team have to assess who needs access to the available services, and what support they can offer. Funding constraints etc have a big impact too no doubt. That's all good and rational, I guess.

Trouble is, although I am 'high-functioning', that's only because I am so practised at acting NT and fitting in - and that comes at a high price for me, leaving me exhausted and emotionally drained. I withdraw from social interaction and become reclusive, then become depressed and lonely.



lundygirl
Veteran
Veteran

User avatar

Joined: 18 Mar 2012
Age: 55
Gender: Female
Posts: 853
Location: Dorset, UK

02 Apr 2012, 10:19 am

Alexender wrote:
At 43 you have had many years to learn to adapt on your own. Because of this it was not evident that you could use some type of diagnosis.

So because you have learned to mask it that means it doesn't matter :roll:


Yes, that makes sense. It's so frustrating though. I do feel pretty stupid for pursuing a diagnosis at my age, to be honest - after all, I have learnt how to cope and I am able to live independently (with support from my husband) etc.

I think the issue for me is that I have been given labels by the doctors which in my opinion don't account adequately for the problems I deal with on a day-to-day basis. I guess it's an issue of identity as much as anything else.



Zener
Emu Egg
Emu Egg

User avatar

Joined: 16 Nov 2011
Age: 69
Gender: Male
Posts: 2
Location: Rindge, New Hampshire

02 Apr 2012, 11:14 am

They can see the duck, but they can't see that under the water he is paddling like hell. This is my situation as well. I grew up being easily insulted. Could never take a joke. Thinking that most of the world was populated by primitive barbarians, blinded by monetary selfishness, that cannot see that they would be so much richer if they would or could understand the power of synergy, working together instead of against each other. All of us are in the same boat together, planet earth. If we destroy our planet, the next live able planet/boat/parachute is light years away. The last thing we want to do is sink the boat. Maybe this is a lesson of sticking together, or falling apart ? As a child no one understood me, as an adult when I try to help, I get treated like they would rather drown, than be rescued by me. I am not good at social chit chat. When I talk I usually have something to say. I have lots to say. I'd like to fall in love like I did as a child.



mushroo
Velociraptor
Velociraptor

User avatar

Joined: 14 Sep 2011
Age: 50
Gender: Male
Posts: 492

02 Apr 2012, 11:30 am

Great thread lundygirl! I don't have any answers, but I know how you feel...

Zener I love the analogy of the duck, that is brilliant insight! :)



Callista
Veteran
Veteran

User avatar

Joined: 3 Feb 2006
Age: 41
Gender: Female
Posts: 10,775
Location: Ohio, USA

02 Apr 2012, 11:41 am

lundygirl wrote:
Trouble is, although I am 'high-functioning', that's only because I am so practised at acting NT and fitting in - and that comes at a high price for me, leaving me exhausted and emotionally drained. I withdraw from social interaction and become reclusive, then become depressed and lonely.
Exactly. Just because you are good at the NT act doesn't mean that your disability isn't real. But they often don't think of it that way. It's more like this: You and a profoundly autistic guy are both trying to buy a gallon of milk. It costs $3. You have $2.50. The other autistic has only 50 cents. Neither of you are going to be able to buy the milk--but because his problem is bigger than yours, somebody hands him $2.50 and he gets his milk. You're left standing there for want of fifty cents, wondering what you're going to put on your cereal.

That's exactly what happens, metaphorically. If you don't need a lot of help, people often think that you can get on without the help you do need. But however big the gap between your ability to cope and the world's expectations of you, if there's a gap, then you're still facing a barrier, and that barrier is just as real as the barriers facing people who are trying to deal with bigger gaps.


_________________
Reports from a Resident Alien:
http://chaoticidealism.livejournal.com

Autism Memorial:
http://autism-memorial.livejournal.com


Pieohpah
Emu Egg
Emu Egg

User avatar

Joined: 2 Jan 2012
Gender: Male
Posts: 4

02 Apr 2012, 11:52 am

lundygirl wrote:
Yes, that makes sense. It's so frustrating though. I do feel pretty stupid for pursuing a diagnosis at my age, to be honest - after all, I have learnt how to cope and I am able to live independently (with support from my husband) etc.

I think the issue for me is that I have been given labels by the doctors which in my opinion don't account adequately for the problems I deal with on a day-to-day basis. I guess it's an issue of identity as much as anything else.


Don't feel stupid about it! I'm up for diagnosis myself, starting the day after tomorrow. I'm 42 and I don't consider myself having disabilities. I've learned to coop with it over the years. The good part with a diagnose for me would be that I can learn more about myself.

But the major advantage for me is to better help my four year old girl, who certainly has some degree of autism. It's always better to know, but I hope we'll both get doctors who knows what they're talking about!

Good luck an feel proud!



lundygirl
Veteran
Veteran

User avatar

Joined: 18 Mar 2012
Age: 55
Gender: Female
Posts: 853
Location: Dorset, UK

02 Apr 2012, 12:51 pm

Callista wrote:
lundygirl wrote:
Trouble is, although I am 'high-functioning', that's only because I am so practised at acting NT and fitting in - and that comes at a high price for me, leaving me exhausted and emotionally drained. I withdraw from social interaction and become reclusive, then become depressed and lonely.
Exactly. Just because you are good at the NT act doesn't mean that your disability isn't real. But they often don't think of it that way. It's more like this: You and a profoundly autistic guy are both trying to buy a gallon of milk. It costs $3. You have $2.50. The other autistic has only 50 cents. Neither of you are going to be able to buy the milk--but because his problem is bigger than yours, somebody hands him $2.50 and he gets his milk. You're left standing there for want of fifty cents, wondering what you're going to put on your cereal.

That's exactly what happens, metaphorically. If you don't need a lot of help, people often think that you can get on without the help you do need. But however big the gap between your ability to cope and the world's expectations of you, if there's a gap, then you're still facing a barrier, and that barrier is just as real as the barriers facing people who are trying to deal with bigger gaps.


Callista, you have really helped to calm me down and feel less despairing, thank you. I'm battling between my rational side and my emotional side, and the emotions are winning at the moment. You're encouraging the rational side to try and regain some balance, if that makes sense.

I felt that I had been dismissed by the doctor - she seemed to be saying - look, you can cope so what is your problem? I got the impression that she felt I was wasting her valuable time, and that I should count my blessings that I am able to function.

I do feel that I am facing barriers and I do feel that I'm not NT. I also really want to accept that the indicators all point to the fact that I am on the spectrum. I (perhaps mistakenly) felt that I needed to go down the diagnosis route to get it formalised, and in doing so have learnt yet again that as soon as doctors etc get involved then it becomes all about 'how affected are you?' and 'do you deserve/need to have any help?'



CockneyRebel
Veteran
Veteran

User avatar

Joined: 17 Jul 2004
Age: 49
Gender: Male
Posts: 113,666
Location: Stalag 13

02 Apr 2012, 1:03 pm

That's why I've never been a fan of functioning labels.


_________________
Who wants to adopt a Sweet Pea?


FireBird
Veteran
Veteran

User avatar

Joined: 12 Feb 2007
Age: 41
Gender: Female
Posts: 2,151
Location: Cow Town

02 Apr 2012, 1:22 pm

Maybe you can look for someone else for services. Are you able to hold down a job? I am as well high functioning autistic. I am not Asperger's. Now a days though I am closer to Aspergers because I am more high functioning than when I was a child. Sad to say I am not able to hold down a job but its more based on my anxiety (very severe... in fact when I went to the state doctor for SSI payments he said I was one of the worst cases he has seen), depression, and schizoaffective disorder. I am now able to socialize and actually enjoy it (when i was a kid I didn't care and didn't do it at all). My brother just went in for a diagnosis for autism as well to get services and he is high functioning. I don't know the full results at this moment but the doctor (who is also my psychologist and she specializes in autism) says it looks like he is on the spectrum. This means in my family alone I have 3 (out of 4) people who are on the spectrum. In some ways I am the highest functioning because I am able to socialize but my brother and my dad have trouble. Just because you are older doesn't mean its too late to get a diagnosis because if you are struggling at work and can't work or something then it might be beneficial to get a diagnosis no matter the age. My brother is 26 and went for a diagnosis. What is weird is the day after he went in, the autism rate is now 1 in 88. I wonder how much longer before autism is the new normal.



lundygirl
Veteran
Veteran

User avatar

Joined: 18 Mar 2012
Age: 55
Gender: Female
Posts: 853
Location: Dorset, UK

02 Apr 2012, 1:30 pm

CockneyRebel wrote:
That's why I've never been a fan of functioning labels.


I have never come across functioning labels before. I guess they serve a diagnostic purpose and help service providers to allocate support etc, and I suppose this is particularly important these days with all the funding shortages etc within the NHS.



lundygirl
Veteran
Veteran

User avatar

Joined: 18 Mar 2012
Age: 55
Gender: Female
Posts: 853
Location: Dorset, UK

02 Apr 2012, 1:42 pm

FireBird wrote:
Maybe you can look for someone else for services. Are you able to hold down a job? I am as well high functioning autistic. I am not Asperger's. Now a days though I am closer to Aspergers because I am more high functioning than when I was a child. Sad to say I am not able to hold down a job but its more based on my anxiety (very severe... in fact when I went to the state doctor for SSI payments he said I was one of the worst cases he has seen), depression, and schizoaffective disorder. I am now able to socialize and actually enjoy it (when i was a kid I didn't care and didn't do it at all). My brother just went in for a diagnosis for autism as well to get services and he is high functioning. I don't know the full results at this moment but the doctor (who is also my psychologist and she specializes in autism) says it looks like he is on the spectrum. This means in my family alone I have 3 (out of 4) people who are on the spectrum. In some ways I am the highest functioning because I am able to socialize but my brother and my dad have trouble. Just because you are older doesn't mean its too late to get a diagnosis because if you are struggling at work and can't work or something then it might be beneficial to get a diagnosis no matter the age. My brother is 26 and went for a diagnosis. What is weird is the day after he went in, the autism rate is now 1 in 88. I wonder how much longer before autism is the new normal.


I have been out of work for about 2 years now. I do function pretty well in terms of living independently etc, but have significant problems with social anxiety, to the extent that I am quite reclusive. I also react badly to change, need to stick to my routines and find it very hard to make conversations or maintain friendships. Oh, and I have sensory issues too which can be troublesome. These aspects all seem to make life that bit more difficult for me.

I am glad to hear that you are now able to socialize, and that things have become easier for you, I think maybe part of this comes with maturity and learning how to cope on a day-to-day basis. I also think that there is much more awareness about autism these days, and more support available via websites, forums etc - this has to be a good thing in my view.