Late middle age insight

Hi Gaz,

My eldest sister has just been diagnosed at the age of 40 .. but ONLY because we (as her family network) pushed the Drs to pursue this. It came to a head recently where she'd been having some work issues and now finally she's been seen by a clinical psychologist, who was marvellous!

Is there anyone else you can take along with you, as a) some support and b) to speak back to the GP if you become flummoxed or pushed away by the GP. ?

hi, what test you have used? 

i have randomly found one at http://www.aspergerstestsite.com/75/autism-spectrum-quotient-aq-test/#.UkNYm4ZjuQI 

i scored 41 although i was not sure about a few questions. in some i would rather pick a neutral answer, too. 

explorer said:

Hi Gaz, IntenseWorld is absolutely right. A proportion of us work, because we can, because we can get employment and sometimes, because we mask difficulties so well that we have no choice but work or starve. Not many  are so lucky, but masking well brings its own problems.  

I have a diagnosis of Autism from one of the major UK diagnostic centres and I have used my "triad of impairments" to forge a successful career in communications.

Your GP may explode with rage at the sheer audacity of us autists who insist on our rights to function, but we do insist. Arm yourself with your rights, wield a copy of the Adult Autism Strategy, advise you GP to follow the NICE adult autism diagnostic pathway and when he/she has recovered from the shock that a person with a disability can speak in whole sentences, ask if they are up to the job, or should you refer up to their local health authority to step in and obey the law? Not that it makes me angry or anything.... Phew - lucky I didn't get really riled!

 [insert image of machine-gun toting squirrel here].

Hi Gaz, IntenseWorld is absolutely right. A proportion of us work, because we can, because we can get employment and sometimes, because we mask difficulties so well that we have no choice but work or starve. Not many  are so lucky, but masking well brings its own problems.  

I have a diagnosis of Autism from one of the major UK diagnostic centres and I have used my "triad of impairments" to forge a successful career in communications.

Your GP may explode with rage at the sheer audacity of us autists who insist on our rights to function, but we do insist. Arm yourself with your rights, wield a copy of the Adult Autism Strategy, advise you GP to follow the NICE adult autism diagnostic pathway and when he/she has recovered from the shock that a person with a disability can speak in whole sentences, ask if they are up to the job, or should you refer up to their local health authority to step in and obey the law? Not that it makes me angry or anything.... Phew - lucky I didn't get really riled!

What you need to do is put it in writing, that way it's official and they can't back down.

Tell them the Autism Act is law and you are entitled to a referral.

Also tell them that clinically, your research has discovered, that it is entirely possible to make a diagnosis without childhood history and people have been diagnosed without it.

Tell them you'd rather not have to approach the head of adult services at the CCG to ask why GPs are ignoring the law, nor to complain to the practice manager or even PALS about them.

State that you request an immediate referral and give them 7 days to reply in writing confirming the referral has been made to an autism assessment service.  Stress that you are not requesting, nor in need of, a referral to mental health services for a generic psychiatric assessment.

Good luck.

Okay. Turns out that 50% of my Dr's Surgery specialise in TALKING LOUDLY AND BEING PATRONISING.

"Well, you're over fifty, what difference will a diagnosis make? If isn't as if we can ask your parents now, is it (Nice touch, and so thoughtful to my feelings...) Why don't you let it go and just get on with life?*  So very nice 

Not giving up...this is a war, not a battle...

Gaz, I am inordinately proud of you.  Until adults fight this erroneous barrier-making from GPs they will carry on getting away with it.  You owe it to yourself and you will be helping your fellow ASC-suspecting adults.  Pleased also you are finding strategies for work.

So, I booked another appointment, with a different doctor, for next Tuesday. I'm not running away from this, I want a proper answer.
I admit at 53 I'm a little nervous, but then I've had 53 years of having to work twice as hard to get where I am. Already, armed with what I have learned here, I've made work easier by the simple expedient of getting in the office an hour early before the noisy shouty lot get in. I can get more work done in a quiet hour than I can in three when the office is full...and now I can understand why

@emel: don't accept another knockback.  People are living on average longer and longer, there are a significant amount of 100 year olds out there, and you are entitled to a quality of life and support.  They are not allowed to discriminate due to age, and your GP was wrong when he said that a diagnosis is impossible at your age.  I read on another forum of a woman of a similar age to you that is on the waiting list to get an ASC assessment in my area.

You are entitled to an ASC assessment as a result of the Autism Act and the the Autism Strategy, no matter what your age.  Read up on the Rewarding and Fulfilling Lives stuff:

https://www.gov.uk/government/news/fulfilling-and-rewarding-lives-the-strategy-for-adults-with-autism-in-england

Hi Gaz,

I know just how you feel! My GP was exactly the same.  I tried the process a couple of years back and although I did get a sort of intermediate referral, I was told that it was impossible to diagnose me due to my age (I'm now 63). 

I strongly suspect that this brick wall we encounter is partly lack of NHS funding and partly ageism (they think we'll all be dead in a few years so it doesn't really matter.)

The reason that I have joined this forum is in the hope to meet other people in my situation - so we can shout really loud until someone hears us.

In the meantime I am going back to my GP to complain and ask again for referral. No doubt I'm lining myself up for another knockback.

Emel

Dear Gaz,

In addition to the other useful information above, you may also find the following page from the NAS website helpful:

http://www.autism.org.uk/About-autism/All-about-diagnosis/Diagnosis-information-for-adults.aspx

Adél (NAS moderator)

I think another huge part of the problem is that clinicians are not in touch with research and seem to not even understand the genetic link.  This is why CAMHS haven't once acknowledged my eldest daughter's high genetic risk.

Although I am a pretty formidable researcher, all it entails is dogged persistence at the computer - something that any clinician can also do.  So why are they so behind with the research and up-to-date knowledge?

Why is there such a gap between discoveries and knowledge and the people on the ground?

How is it I can find bone fide research and become more of an expert in ASCs than clinicians in CAMHS and adult services?

How is it they are unable to take action in the face of overwhelming evidence, including genetic and research...because they don't understand it!

Then they make wrong decisions because they lack the enquiring mind to even bother to educate themselves to enable the right decisions.  Why are people like this employed in such vital positions?!

I have never had training in those areas and yet I seem to know more than them!  This is not an acceptable state of affairs, clinicians should be made to keep up-to-date on these things.  Their ignorance is blinding and it shouldn't be allowed.

The arrogance in never asking us how it feels to be autistic, what affects us and why and what we need, never offering us opportunities or advertising things like Scrutiny Panels (which in my area I have found about only by research and networking with other parents of ASC children) is unbelievable.  It's like a closed shop where only a select few are allowed in.

In my experience psychiatrists are worse than psychologists at understanding ASC issues.  The NHS needs expert clinicians who know all about ASCs not ordinary clinicians who have had a quick course in how to use clinical tools.

To pick up re CAMHS saying children grow out of ASC this is a common misconception, now so established that the Autism Act and the NICE Guidelines for adults, and all the empty promises seem unable to contradict.

The professionals confuse "cause" in the context of "cause and effect". Their idea of cause is the underlying genetic or developmental CAUSE, and EFFECT is just the symptoms.

So as teenagers reach maturity and begin to separate into independent adult lives, the bullying and other difficulties with the peer group, that become so ciritical in tenage years for people on the spectrum (even though they may take longer to mature due to delay factors) DISSIPATE. That part of the problem seems to go away.

Also confidence building, and learning of substitute skills makes a difference. And conditioned changes, like less obvious gaze aversion or subdued reactions to stress make a difference.

That's also why the psychologists and psychiatrists out there think a bit of CBT and a pill cure the problem - they only do temporarily.

Because what the professionals (and NAS) don't seem to comprehend is that there is another kind of cause factor: part of the characteristics of ASC are actual real difficulties - sensory differences and sensory overload, the fact that social communication (while it might appear to improve a little) doesn't go away, and the fact that people on the spectrum do fixate on things. These CAUSES continue to cause problems.

But the psychiatrists and psychologists have totally failed to recognise these CAUSES.

That's why treatment up to now has focussed on children, and why they think you grow out of it. It's not that we grow out of it, but THEY have signally failed, through gross negligence, to actually prepare strategies for adults.

That's why transition is still a mess ( oh but they say transition isn't important as you'll grow out of it).

The Autism Act wont amount to anything until the failure of psychologists and psychiatrists to properly understand this condition is brought centre stage. It is a gross failure of the needs of more than one percent of the population.

For similar one percents there have been inquiries and investigations. Time we had some answers as to why we have been so badly let down

Gaz, a family GP is just a failed Doctor, unable to specialise (told that from a honest GP).

So you are looking for an explanation on the background shadow of your life and some comfort. How about a psychologist referral in lieu an autism road, due to the anxiety, then when you get to see the Psychologist, he/she may diagnosis Aspergers, a long way for a short cut.  

longman said:

 yeah anxiety about fruitless attempts to find a genuine GP.

When you consider it is a factor in alcoholism, drug abuse and family break-ups you would think they'd get round to taking it seriously rather than all this quackery. They waste resources giving people the wrong treatment.

Your comment about GPs is soo true.

By the way, longman, (this might be stating the obvious) but what did you mean by the family break-ups etc and them getting round to taking it seriously. I've heard of cases of people recieving the wrong diagnoses and the NHS et al getting it TOTALLY wrong for them. But I might be a bit naive but do things really get to that stage for people without diagnosis. I know they may get emotional and mental health difficulties, either as co-morbodities or ortherwise, but state lets it get that worse.

Thanks anyway,

urspecial

Hi Gaz,

The Autism Act 2009 Guidance requires your GP to refer you for diagnosis. It is really unfortunate, but sadly not uncommon, of matuer adults being denied a diagnosis and your point about retiring etc before getting the help you need.

Really fascinaing that you met with Rina and good to see it helped.

As others may also tell you, just because there's a law on Autism doesn't mean you'll find it easy to get the diagnosis unfortunatly.

You may have to complain or follow the issue with your local NHS Clinical Commissioning Group (CCG - the new NHS body that buy services for people like A&E departments, mental health etc).

I hope this helps you and remember not to give up

urspecial

Just know that you are not alone with this.  We are a significant minority.  1% (or more) of the population.  You may not think you need support but you may benefit from CBT, therapy/counselling, access to Aspie social groups (usually run by charities rather than local authorities) or something.  It's never too late to benefit and maybe even change direction.

At 53 years old I don't think I need treatment. I've got walls, strategies, excuses coming out of my ears. And at the speed the NHS seem to travel I'm likely to be retired and possibly dead by the time I get offered treatment anyway:)

I just want an explanation as to why I was the Odd Kid in school. Why I couldn't make friends. Why I could get qualifications like shelling peas but not a relationship.  Why I ended up divorcing the woman I loved. Why I was always scared/nervous/anxious. Why I didn't have a social life, and later why I have a lot of good and real friends who I seldom meet but interact with online.

I just want to know why the last 53 years hurt, dammit. It isn't much of a thing to ask, surely? 

@longman: CAMHS told me recently that some children grow out of ASC, which is even worse as they are CAMHS!

How can the NAS push for action campaign fight so much ignorance.

I was shown the referral letter from my doctor at the time of diagnosis. He said in his letter that I was probably delusional as autism only affects children.

GPs are sadly blissfully ignorant about autism. Before I asked for a diagnosis, over the years I'd had numerous offers of relaxation tapes, parent-adult-child therapy, stress reduction. Anything I had was apparently explained by anxiety - yeah anxiety about fruitless attempts to find a genuine GP.

When you consider it is a factor in alcoholism, drug abuse and family break-ups you would think they'd get round to taking it seriously rather than all this quackery. They waste resources giving people the wrong treatment.