Page 1 of 2 [ 24 posts ]  Go to page 1, 2  Next

ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,245
Location: Long Island, New York

30 Dec 2019, 4:14 am

Autism diagnosis: 'I want 40 years of my life back'

Quote:
For most of his life, Barney Angliss struggled to fit in. At the age of 49, he finally had a diagnosis that helped him understand why

As a child, he remembers his family not allowing him to go to a new school. "They thought I would be bullied to death".

Although he was good with words he had few friends and - by his own admission - he lacked empathy and social skills.

By the time he had a home, a family and a job as a teacher, "catastrophic thoughts" were building up.

He felt increasingly depressed and inadequate, and his physical health was suffering too - with severe bouts of asthma becoming more and more regular.

Finally, prompted by his wife, Barney saw a clinical psychologist - and was diagnosed with Asperger's.

He says suddenly his lack of social skills, his bluntness and constant search for order made sense. "It explains all of my failures."

Robert Greenall, 53, a BBC journalist, recently learnt he is also on the autistic spectrum.
"All my life, I'd been wondering why I could never quite 'get' other people, and they could never quite 'get' me," he says.

"You're an enigma" or "you're on another planet" were jibes he heard frequently.

For a long time he thought it was to do with being an only child, or being sent to boarding school and having an isolated childhood.

While he loved looking at maps and reading about railways, other boys seized on his awkwardness and lack of confidence on the sports field.

As an adult, he found social interaction hard and small talk at parties a nightmare. He wondered why he couldn't read people's emotions and show empathy.

But the pieces didn't quite fit - until he watched a TV programme about autism.
"The stereotyped view that I'd always had of autistic people was that they were either very severely disabled and unable to communicate, or formidable computer geeks.

"But seeing people in the documentary who seemed perfectly normal getting diagnosed, and identifying with them in so many different ways, was a revelation."
Robert felt "immense relief" following his diagnosis.

"Finally I had a name for the thing that had made me feel like an alien for so long. Finally I could stop feeling bad about being different."

Barney and Robert are just two of an unknown number of older adults who have spent much of their lives not knowing why they feel different.

With autism first classified as a mental disorder in 1980, people born before then may have gone undiagnosed or been misdiagnosed.

Around 700,000 people are thought to be autistic in the UK, and more are being diagnosed all the time, says Anna Bailey-Bearfield, policy and public affairs manager at the National Autistic Society.

"Autism is often seen only to affect children but more autistic adults are now appearing on TV and people are starting to see themselves represented."

But the impact of not knowing for 40 or 50 years "can be very traumatic", she says, leaving people feeling anxious and socially isolated.

National guidance says people should wait no longer than 13 weeks, but 2019 NHS data showed a significant number waiting longer.

In Robert's case it took 18 months "of to-ing and fro-ing, anxious phone calls and plenty of disappointments".

He finally went for a private assessment, which cost £1,900. "I just wanted it all done. I felt I couldn't move on with my life."

He remembers the day clearly - and answered questions for six hours.
"Many of them had me searching for long-forgotten childhood memories - what textures did I like touching? Did I walk downstairs in a funny way?"
The result was a diagnosis of autism spectrum disorder.

"It was nothing more specific than that - there is too much confusion about definitions, so many specialists now tend to refrain from using any," he says.

But the diagnosis of autism spectrum disorder later in life can be an overwhelmingly positive experience, research from Anglia Ruskin University suggests.

Dr Steven Stagg, who interviewed nine people over the age of 50, found it "allowed them to let go of impossible struggles and reframe their self-identity".

For one person it was "a sort of eureka moment - I realised it wasn't my fault". For another it was "the relief of knowing what's wrong, or what has been wrong".

But there are often huge regrets too.

For Barney, who was interviewed for the study in Health Psychology and Behavioural Medicine, there is the realisation that those closest to him have suffered too.

"If I think back I can't believe I was a teacher - not a very confident one, not able to communicate with people. And he says he realises now he had turned into a "stressy Dad", his health had deteriorated and relationships were strained.

His diagnosis of Asperger's was a turning point.
"Diagnosis has unlocked a totally different version of me," he says.

He describes the day he organised industrial action among fellow school teachers as a notable achievement, and there have been others too.

From struggling to make friends, he now has hundreds - and although communication can sometimes be strained, he is able to be up front about who he is.

Speaking at events, organising festivals dedicated to specialist learning, writing, training and teaching about autism is now his focus.

Barney can now talk about what makes him who he is.

He loves the texture of raw fish, for example, and remembers always wanting to slice it for his mum.
"I would spend all my time feeling the inside of it.
"Fish has a grain, so does chicken. Depending on the way you cut it, the feeling is different. I just loved that."

He also finds his shirts reassuring, and points to the "tiny herring-bone weave" of the one he's wearing.
It's one of 25 he owns, all with small details he is fond of. Just knowing they are there makes him feel in control.

Robert is still getting used to his diagnosis and what it might mean for him - but he was delighted when one friend said she was "proud to have a neurodiverse friend".


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


SharonB
Veteran
Veteran

User avatar

Joined: 14 Jul 2019
Gender: Female
Posts: 2,733

30 Dec 2019, 10:12 am

Right there with them (in age, recent DX). I am glad the article mentioned one achievement. Every day is an achievement for many of us!!



ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,245
Location: Long Island, New York

30 Dec 2019, 10:30 am

SharonB wrote:
Right there with them (in age, recent DX). I am glad the article mentioned one achievement. Every day is an achievement for many of us!!

We are the survivors. Many of our autistic peers did not make it, they probably were locked away or succumbed to directly or indirectly Autism caused and being autistic in a NT world maladies.

Though our lives may be far from what is normal or far short of what we expected surviving up until this point is not something that should be downplayed. It is something to remember during the dark periods.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


Fnord
Veteran
Veteran

User avatar

Joined: 6 May 2008
Age: 66
Gender: Male
Posts: 59,750
Location: Stendec

30 Dec 2019, 10:38 am

We are survivors, not victims.

True, I do wish my childhood had been easier, but there is nothing to gain by obsessing about it.  My parents and most of the bullies have already passed away, so there is no way to even discuss and explain how I was back then.

Soon I will retire, and do the inevitable slow fade into obscurity, then oblivion.

"... like tears in the rain..."


_________________
 
No love for Hamas, Hezbollah, Iranian Leadership, Islamic Jihad, other Islamic terrorist groups, OR their supporters and sympathizers.


SharonB
Veteran
Veteran

User avatar

Joined: 14 Jul 2019
Gender: Female
Posts: 2,733

30 Dec 2019, 12:29 pm

ASPartOfMe wrote:
SharonB wrote:
Right there with them (in age, recent DX). I am glad the article mentioned one achievement. Every day is an achievement for many of us!!

We are the survivors. Many of our autistic peers did not make it, they probably were locked away or succumbed to directly or indirectly Autism caused and being autistic in a NT world maladies.

Though our lives may be far from what is normal or far short of what we expected surviving up until this point is not something that should be downplayed. It is something to remember during the dark periods.


Did it seem I was downplaying it? Sorry if I was unclear. I meant that every day is an achievement for many of us: meeting needs (ours, others). I was going to give an example of basic living but didn't want others to belittle it (ironic if that contributed to the misunderstanding). For myself, I have "achieved" some by NT standards, but most importantly yesterday I put away the irregularly shaped containers on the top shelf or my dishwasher (overcoming my anxiety) - yea! I sincerely apologized to my son about my meltdown and assured him it was me, not him and I am working on it - yea! Today I am thinking of brushing my teeth (to avoid cavities) - yea! ---- I could name a dozen things each day that confront me and I persevere through. My family doesn't understand that those are achievements for me. They see my messy house, my anger and my "poor" hygiene (et cetera) as deficiencies rather than celebrating what progress I do make. I am working on changing that for myself. The diagnosis is very helpful that way. (I have lost undiagnosed AS-like loved ones to institutions and death and nearly lost myself.)



Last edited by SharonB on 30 Dec 2019, 4:20 pm, edited 1 time in total.

Magna
Veteran
Veteran

User avatar

Joined: 21 Jun 2018
Gender: Male
Posts: 6,932

30 Dec 2019, 12:37 pm

As always, thank you for posting such good articles.

I also found a term for what I am and what I need to work on: "Stressy Dad." :( :( :( :(



firemonkey
Veteran
Veteran

User avatar

Joined: 23 Mar 2015
Gender: Male
Posts: 5,570
Location: Calne,England

30 Dec 2019, 12:48 pm

First seen about my mental health late 1973
First recognition I might be on the spectrum Oct 2018. That took moving to Wiltshire.
Asperger's diagnosis May 2019

Troublesome history with mental heath services in Essex. Seen as 'awkward,demanding and troublesome' by professionals who either couldn't be bothered to get to know me ,
or weren't intelligent enough to do so .

The latter is more acceptable than the former .

In practical terms getting a diagnosis at 62 means very little . Too much water has passed under the bridge. In non-practical terms it shows that it wasn't about me being a 'bad person'. That there's a reason why I am as I am . It vindicates what I've believed for a long time , that there was more going on than mental illness .



Sahn
Veteran
Veteran

User avatar

Joined: 14 Jan 2018
Gender: Male
Posts: 5,503
Location: UK

30 Dec 2019, 12:54 pm

I was hoping that it wouldn't be a sob story but no such luck.



Fnord
Veteran
Veteran

User avatar

Joined: 6 May 2008
Age: 66
Gender: Male
Posts: 59,750
Location: Stendec

30 Dec 2019, 1:41 pm

domineekee wrote:
I was hoping that it wouldn't be a sob story but no such luck.
Did you stop reading before the upbeat ending?


_________________
 
No love for Hamas, Hezbollah, Iranian Leadership, Islamic Jihad, other Islamic terrorist groups, OR their supporters and sympathizers.


carlos55
Veteran
Veteran

Joined: 5 Mar 2018
Gender: Male
Posts: 1,779

30 Dec 2019, 4:02 pm

Fnord wrote:
most of the bullies have already passed away


So you got the last laugh :lol:

Yes we are all survivors by the way.


_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw


ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,245
Location: Long Island, New York

30 Dec 2019, 7:23 pm

SharonB wrote:
ASPartOfMe wrote:
SharonB wrote:
Right there with them (in age, recent DX). I am glad the article mentioned one achievement. Every day is an achievement for many of us!!

We are the survivors. Many of our autistic peers did not make it, they probably were locked away or succumbed to directly or indirectly Autism caused and being autistic in a NT world maladies.

Though our lives may be far from what is normal or far short of what we expected surviving up until this point is not something that should be downplayed. It is something to remember during the dark periods.


Did it seem I was downplaying it? Sorry if I was unclear. I meant that every day is an achievement for many of us: meeting needs (ours, others). I was going to give an example of basic living but didn't want others to belittle it (ironic if that contributed to the misunderstanding). For myself, I have "achieved" some by NT standards, but most importantly yesterday I put away the irregularly shaped containers on the top shelf or my dishwasher (overcoming my anxiety) - yea! I sincerely apologized to my son about my meltdown and assured him it was me, not him and I am working on it - yea! Today I am thinking of brushing my teeth (to avoid cavities) - yea! ---- I could name a dozen things each day that confront me and I persevere through. My family doesn't understand that those are achievements for me. They see my messy house, my anger and my "poor" hygiene (et cetera) as deficiencies rather than celebrating what progress I do make. I am working on changing that for myself. The diagnosis is very helpful that way. (I have lost undiagnosed AS-like loved ones to institutions and death and nearly lost myself.)

Post reworded to hopefully get my point across.

Though our lives may be far from what is normal or far short of what we expected surviving up until this point is an big time achievement that we should recognize more often. It is something to remember during the dark periods.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


firemonkey
Veteran
Veteran

User avatar

Joined: 23 Mar 2015
Gender: Male
Posts: 5,570
Location: Calne,England

30 Dec 2019, 8:42 pm

If I'm a survivor it's more the sheer luck of a blind man walking through a minefield without stepping on any mines . I can't say it's taken any great effort or skill to still be in the land of the living .



Jakki
Veteran
Veteran

User avatar

Joined: 21 Sep 2019
Gender: Female
Posts: 10,120
Location: Outter Quadrant

30 Dec 2019, 11:48 pm

firemonkey wrote:
If I'm a survivor it's more the sheer luck of a blind man walking through a minefield without stepping on any mines . I can't say it's taken any great effort or skill to still be in the land of the living .


Those mines that were cleared ? Had blown up already , yup those were the ones I stepped on....written tongue in cheek. But sure feels like it a lot.
Nope. very nearly did not make it twice according to doctors.. best parents could hope for after 1st accident was to be a vegetable in a wheelchair .
At 18 yrs . Old... sorry. couldn't do either of those well. 45 yrs later..still upright and above ground.. cripes 5 yrs ago read life expectancy for Aspies was max
Of 27 yrs . And every single one of us survived past 21. are above the average life span . Given my previous experiences , I might say that is beating the odds


_________________
Diagnosed hfa
Loves velcro,
Quote:
where ever you go ,there you are


SharonB
Veteran
Veteran

User avatar

Joined: 14 Jul 2019
Gender: Female
Posts: 2,733

31 Dec 2019, 8:49 am

Jakki wrote:
firemonkey wrote:
...cripes 5 yrs ago read life expectancy for Aspies was max
Of 27 yrs . And every single one of us survived past 21. are above the average life span . Given my previous experiences , I might say that is beating the odds

Coincidentally yesterday I read the average life expectancy for Asperger's was 54. I wonder that it still is missing the late diagnosed folks (or undiagnosed like my hermit parent, mid 70s) and of course if it doesn't include the correct proportion of women who are generally longer lived.

This morning I was composing a letter in my mind to a sibling who is finding much fault in her ASD teenager. I am thinking of 4% suicidal ideation in the general population but ~75% for ASD women. I wonder that the highest risk is under 30 and then again over 70 or so relative to self-care and executive function. Still to this day I appear happy-go-lucky (or eerily calm) when I am in need so folks don't "get" it, and although my niece doesn't have a bubbly personality type, I worry that she is similarly suppressing her concerns (flat affect). I wish there were some type of meter that one could consult --- ah, yes, here! my underlying anxiety and stimulation level has reached Orange and now these are the things I do to lower it... would you please hold these items, do my job and watch the kids while I address this?



kraftiekortie
Veteran
Veteran

Joined: 4 Feb 2014
Gender: Male
Posts: 87,510
Location: Queens, NYC

31 Dec 2019, 8:54 am

Life expectancy for Aspies, leaving aside suicide, is similar to non-Aspies.

I intend to live at least 30 more years. I’m 59 in two days.

I’m “lucky” I was diagnosed back in the 1960s.



SharonB
Veteran
Veteran

User avatar

Joined: 14 Jul 2019
Gender: Female
Posts: 2,733

31 Dec 2019, 9:45 am

kraftiekortie wrote:
Life expectancy for Aspies, leaving aside suicide, is similar to non-Aspies.

I intend to live at least 30 more years. I’m 59 in two days.

I’m “lucky” I was diagnosed back in the 1960s.

@kaftiekortie, happy early birthday!! !! !

Perhaps I should PM you, I find this fascinating. You were diagnosed with Autism or related condition? Teasing: Are the ASD gold standard? Did you have some support and understanding growing up or not? Does that mean you felt less "wrong" (shame) or not? You could write your own book: Early diagnosis, now late in life. Or did you already?

Now past my adulting years, I also want to be long lived and was concerned about all the stats. I have a great aunt who was 90-some who is a role model for me, and I wonder if she was AS-like.