ASD diagnosis

[wombat]

I know, I know, talking about ASD on a modelling community probably barely qualifies as off-topic  enough to need to go in chat...

 

long story short... the eldest is currently in the final stages of assessment of ASD, and the likelihood is she’ll be diagnosed. Not to worry - she’s very high functioning but having the bit of paper will certainly help when entering secondary school. It so happens about ten years ago a SENCO specialist married into the family who has been a great help, and although not able to clinically diagnose, can certainly say “I know where I’m putting my money”, so to speak. We have several diagnosed neuro-diversities among the extended family so it’s familiar territory for us...not to mention the likely greater number of undiagnosed.

 

Speaking of which ..during the process, which involves quite a bit of family history, I have been brought to bear with the reasonable likelihood that I should count myself among the undiagnosed. I recall when I was 8 and diagnosed with very short sight I was asked why I hadn’t raised it. “I thought everyone else could only see that badly” I replied. I’ve always known I’m very introverted but...let’s say it turns out I tick a lot more boxes than I thought when my understanding was more basic.

 

.I’m in my mid 40s, have a good job and family. I’m certainly used to who I am, but have to admit that my eyes have been opened to why I might be struggling with some of the things that I do. Some current work stress certainly acquires a different dimension if seen in this light.

 

Getting a diagnosis is probably going to involve a long wait (likely a year at least) or a few grand to go private. Luckily that is an option if I feel needs be. But a large part of me thinks...bit late now isn’t it? The system is badly gummed up and they don’t need over the hill crocks clogging it up.

 

So my question is...Has anyone here found themselves in a similar position at a similar age (or more) and got a diagnosis? Was it worth it? Did it notably improve your quality of life (or that of those around you, for that matter) or was it a case of “well, waddyaknow...” and much ado about nothing?

 

all contributions appreciated...by PM if preferred, naturally.

 

 

[alt-92]

I have many traits of what is/was called an Aspie. Sort of formally diagnosed, also at a later age. 

8 minutes ago, wombat said:

I’m certainly used to who I am, but have to admit that my eyes have been opened to why I might be struggling with some of the things that I do. Some current work stress certainly acquires a different dimension if seen in this light.

Yep, familiar. 
It also helped me to better understand and explain the effects a traumatic experience earlier in my life have had and how they reflect work relations. 

 

 

 

I can only speak for me, of course, but getting to grips with how your brain 'works' in those situations has certainly lessened anxiety levels - even though many of the behavioural patterns one has adopted are still there and take work (and time) to change where and/or when appropriate.   
 

 

 

[wombat]

Thanks alt 92...I don’t think anyone will ever mistake me for a people pleaser!

 

But I have been introduced to the saying “you meet one autistic person...you’ve met ONE autistic person”

[IanHx]

Similar situation, 10 years older.

Bottom line is :    would it make any appreciable difference to you ?

 

I couldn't see that it would make any difference to me, so didn't bother.  But everyone's different.

 

Although I do now understand that the question on the online ASD quiz asking "are you fascinated with dates"

was NOT talking about dried fruit !!!

[alt-92]

2 minutes ago, IanHx said:

Bottom line is :    would it make any appreciable difference to you ?

I couldn't see that it would make any difference to me, so didn't bother. 

That is more or less the reason I haven't pursued the entire formal diag process. I don't need the official label to deal with it (employers, don't trust 'em - or maybe that has to do with the above schema?).

Just gimme some tools I can use. 

[wombat]

Perhaps I should add, the nature of my employer is such that I’d bet my house that the proportion of ND in the workforce is way above average.

 

( this may be a factor in me perhaps not recognising how atypical aspects of my personality are...I’m surrounded!) 

 

Though that perhaps makes it more ironic that, so far as I can see, there is no accommodation for it in the otherwise quite extensive commitment to EDI. 

[Pete in Lincs]

I had to google ASD as I wasn't too sure exactly what it meant.

They say..

"Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. People with ASD often have problems with social communication and interaction, and restricted or repetitive behaviors or interests. People with ASD may also have different ways of learning, moving, or paying attention."

 

I think an awful lot of people can associate with the above. Is there such a person as the perfect Human?

We all have to fit into a 'slot' in society in order to function without 'standing out' which can lead to all sorts of problems. Especially for children.

IIRC a recent TV documentary opened my eyes with the statement that there is a whole rainbow of Autism which is not always easily visible or obvious.

I wish more people were aware of the condition and it's levels of complexity. All the best to you and yours, Pete

[wombat]

Quite so. One of the early elements of the process is, “how would you feel if your child was diagnosed?”

 

the way i see it is it’s not like being diagnosed with, say, high blood pressure or kidney disease or whatever, where you find out you have a thing that you didn’t have before. She is how she is. A diagnosis merely states that “how she is” falls within the boundaries of a category that the relevant practitioners have deemed sufficiently homogenous to be useful. 

 

One  way i’ve explained it to her is to say “there are three members of your wider family diagnosed with one or more neuro-diversities. Can you guess who?”   She can’t. They’re all family she’s grown up around and they are how they are. (though I’m sure in a few years she’ll tumble to at least one or two of them, as they are quite pronounced)

 

 

[treker_ed]

A lot of professionals have started terming it ASC Autistic Spectrum Condition, rather than a Disorder! 

 

I was diagnosed back in 2019, and other than identifying why I can be a little awkward in social situations or have "emotional episodes" and explaining to myself why I am who I am with all my idiosyncrasies, it hasn't made much of a difference to my day-to-day life.  But let me explain that little better...

 

I always suspected I was on the spectrum, and then a friend posted a little article showing autistic traits in adults, and out of the 30 or so, I recognised probably 26 to 26 out of the 30. I asked for a referral and was diagnosed. This helped me to explain what was going on with my brain chemistry. It also helped to explain to my wife, and family why I did certain things, and why in my 50 years of being on this planet I had done things the way I had always done them. It's not been easy, but it finally explained to me why I was the way I was! It didn't change anything about me, nor did it change me to those who cared the most about me. I was still the same person I always was, they just understood me a little better. Over my years I had self-learned strategies on how to cope with certain situations which had the effect of masking my Autistic traits - but they still stood out to me! Diagnosing Autism is a lot easier with males than it is with girls/women, they are able to hide/mask it a lot better.  @wombat, you are lucky to have got your daughter assessed and diagnosed, I know of families that have struggled to get their daughters assessed due to the fact that they have not presented Autistic traits at school, but it's pretty obvious at home that they are on the spectrum!

 

I would say though the last couple of years has been really difficult in some respects. Whilst I have loved the social distancing aspect of it all, I have hated the need to go out and do the weekly shopping! Yes, I know on-line shopping, but the number of times I have incorrect orders delivered, I now prefer to do it all myself (both myself, and wife have dietary requirements and despite saying "No Replacements" they still have and replace stuff that are not suitable for our dietary issues!) I hate people coming into my personal space unless I "invite" them in, so for example if a Nurse, Doctor, Optician etc, need to do an examination, I know I need to let them near me, so I am mentally prepared for that and sub-consciously "invite" them into my personal space, all well and good; but when out shopping, if I am stood in front of a shelf looking for something and someone just barges in front of me to grab something of the shelf without saying excuse me, I find that both rude, and an invasion of my personal space. Doesn't take an extra couple of seconds to say "Excuse me, do you mind if I ........." and I would move out of the way. Similarly, I hate it if someone walks too close to me on an escalator, or travelator. If I'm out with the wife, she will stand behind me to make sure no-one can do that! I can control the distancing in front of me, she deals with anyone coming too close behind! Weird yes, but it's an autistic trait. I have had a couple of people get nasty when I have asked them to "back off" a little, but on the whole, most people have been understanding about it. I now have a card which asks people not to stand too close to me from the company linked below. and has really helped! They do a whole range of cards and other Autism assistance products.

 

https://stickmancommunications.co.uk/product/asc-dont-touch-me-card/

 

The thing with Autism is that we are all different, and all at different parts of the spectrum, we are all unique and special because of it. I personally would not have it another way

[wombat]

Thanks trekker ed. I must say, post lockdown I’m much more aware of my discomforts...all that time out of practice...not helped by returning to a blended workplace (though that change was on the horizon even before covid).

 

Indeed, diagnosis is a long road. It’s not far off a year since we started and there’s a little way to go yet. It would have been far longer still, but we were offered a “by zoom” route after the first session. We were sceptical but agreed to try it...it certainly works for the basic interview based stuff but I remain to be convinced of how clinicians can do observation that way.

[3DStewart]

It's worth remembering that most ND is on a sliding scale.  For some it's minor, for others it's major.

I've been diagnosed with dyslexia, but I consider it mild and most of the time I don't think about it.  It helped at school as I got longer in public exams which definitely saved the day in a couple of subjects. My current employer is supportive, and I've been given a number of IT aids to assist with it, but if I'm honest I don't use them as I find they don't really help. That's partly because I've spent decades working to improve my weaknesses, which have deceased as a result

I would caution against using a diagnosis as an excuse.  By all means take any help available, but as with most human frailty its effect can be reduced by training and practice.

 

Edited September 30, 2022 by 3DStewart

[Pete in Lincs]

Thanks @treker_ed Spectrum was the word I should have used. Not Rainbow. It was a long day at work!

I can relate to the shopping thing too. I don't enjoy crowds, and there are any number of rude people out there.

[NAVY870]

My son was diagnosed with ASD when he was 5

I was somewhat confused with comments made by his teachers etc about his behaviours as most of the time I thought "I do that"

So at the urging from Flag Officer Home Fleet I went and got checked out, turns out I'm ASD, HFA have PTSD and have chronic depression and anxiety. 

Would have been nice to know this about 50 years ago.

 

If I may be so bold, if you have any doubts or concerns go get a diagnosis. You'll be amazed at the peace of mind it brings. 

[wombat]

20 hours ago, NAVY870 said:

 

I was somewhat confused with comments made by his teachers etc about his behaviours as most of the time I thought "I do that"

 

Yep I had that moment too...

[treker_ed]

5 hours ago, wombat said:

Yep I had that moment too...

Sadly, we don't have children, so have not had that revealing moment! Mine is purely down to "I Know, and have always known/suspected I am"

 

A lot of friends who have children going through the process, have started to realise that they too must be on the spectrum as they are recognising a certain amount of very similar behaviour in themselves, that they also see in their children. Sometimes, it has prompted them to go through the testing process as well. Whilst going through my assessment, myself and my wife were chatting with a couple of friends and telling them about what we were doing, and why. When we explained a little more, they started to recognise that their daughter must be on the spectrum because of little idiosyncratic things that she had been doing.  They pretty matched up with my ASC traits and decided to pursue an assessment.  Sadly, her primary school didn't agree (didn't present as ASC at school - kept head down, behaved, then decompressed at home!!!!) As said earlier - girls don't tend to show ASC traits quite as openly as boys and manage to mask them a lot better! Her secondary school, however, do agree, and have started the ball rolling to get an educational assessment done for ASC.

[noelh]

It's interesting that it's  more difficult to diagnose girls than boys. My godson was diagnosed quite early. But it was certainly obvious because he displays many of the well  known traits. 

 

His older sister was only  recently diagnosed. She was born with a  congenital and usually fatal heart  condition and had years of surgery and treatment which thinking about it,  probably masked her autism. 

 

It makes sense now. 

 

Neither of the parents show any signs. I  feel so sorry for them. The boy while high functioning and intelligent has been violent to his parents and his home shows signs of his loss of control. But I've never seen it because he controls himself around me and my sons,  his cousins and I've been minding him since he was a baby.

 

Interesting that. Clearly he holds back with other people. Only with his parents can he let go.

 

 

Edited October 4, 2022 by noelh

[Pete Robin]

On 10/1/2022 at 7:19 AM, Pete in Lincs said:

Thanks @treker_ed Spectrum was the word I should have used. Not Rainbow. It was a long day at work!

I can relate to the shopping thing too. I don't enjoy crowds, and there are any number of rude people out there.

Hey Pete, I'm kinda thinking "Rainbow" is a pretty neat descriptive of this whole thing. People don't fit in boxes in my view and a Rainbow of people is a fine ideal.

 

My Grandson was diagnosed with Aspergers (hope that's how you spell it) at around 6 or 7 years old. His mum and his grandma (now my wifey) took a long time to adjust, but adjust they did. He's one of the most loving, intelligent, giving souls I've encountered. Now 20 odd years later we've discovered his mum (my stepdaughter) is also on the spectrum. I suspect, from certain observed behaviours, my wife is also autistic in some way (obsessive list writing🥴). I've found down the years that some of the very best people I've encountered have had some form or other of this baffling and infuriating and mesmerising and sometimes wonderful condition.

I hope, and pray I guess, that all of you good people that have related your tales have only good experiences, and that the negative ones are outweighed by the Rainbow side of things.

 

Regards

Pete

[wombat]

The rainbow is taken!

 

its very very hereditary. half of the wife’s family are probably on the spectrum, mostly undiagnosed, which is why I was probably slow on the uptake as only about a quarter of mine probably are!

 

anyway I’ve decided I’ll probably go for it, for several reasons. Got a telephone call with the GP next week to ask for a referral... of course, I hate the telephone...