Austism spectrum

[swotty]

I have recently been diagnosed by my GP, after seeing typical symptoms on the NHS website, as being on the Autism spectrum. I have, according to my research what I believe to be what used to been known as Asperger's. I have to wait around 18 months for any sort of assessment due to long waiting lists.
The diagnosis makes so much sense about how I have been and felt all of my life. Unfortunately it has cost me two marriages and it's looking like a third is also going to end.
Has anyone else been diagnosed? It would be interesting to hear your experiences?

 

[mikehill]

Wow ! I’ve never been for a proper diagnosis myself but have talked to a specialist about it who thought I probably did register, although lower down the register. I probably do have mild Aspergers.
It was watching a program by Chris Packham that I had that “light bulb” moment. At 57 I don’t see the point in being officially recognised myself …

 

[swotty]

Yes, I've watched the Chris Packham program and there is so much that I can identify with, although I'm not sure I'd want to live entirely by myself.....it's a huge spectrum though!

 

[BigMonster]

Here here. The most important thing is that you know, so you are "different" and not "f***** up".
I wish I knew earlier so I could work with what I got instead of trying to "fix myself".

 

[TeeDee]

I have recently been diagnosed by my GP, after seeing typical symptoms on the NHS website, as being on the Autism spectrum. I have, according to my research what I believe to be what used to been known as Asperger's. I have to wait around 18 months for any sort of assessment due to long waiting lists.
The diagnosis makes so much sense about how I have been and felt all of my life. Unfortunately it has cost me two marriages and it's looking like a third is also going to end.
Has anyone else been diagnosed? It would be interesting to hear your experiences?

I'm sorry to hear you have received a diagnosis after much pain and stress - bitter sweet I know but at least you know what the contributing causal factor was/is.

Could you explain how it affects you on a day to day basis or what you are aware of please??

 

[swotty]

Could you explain how it affects you on a day to day basis or what you are aware of please??

Some things are....

At work.... not too much as I have realised I have developed strategies to cope... anxious going into meetings, a need for order and dislike of plans changing.

Personal life ...not enjoying socialising, have very few close friends, don't like calling people (fine at work), difficulty with small talk , again a need for order, dislike of plans changing and a feeling of not belonging or fitting in, obsession with certain subjects and obsessed with collections of certain things (I'm sure most on here have that problem!). All of these I had as a child but have only recently put two and two together.

Relationships... A difficulty understanding of others and my own emotions, lack of empathy , my wife being the only person I'm really comfortable hanging out with (which has out massive strains on her being very sociable) as well as other things I don't wish to put on a public forum.

Hope that explains a little...

Sent from Somerset using magic

 

[TeeDee]

Some things are....

At work.... not too much as I have realised I have developed strategies to cope... anxious going into meetings, a need for order and dislike of plans changing.

Personal life ...not enjoying socialising, have very few close friends, don't like calling people (fine at work), difficulty with small talk , again a need for order, dislike of plans changing and a feeling of not belonging or fitting in, obsession with certain subjects and obsessed with collections of certain things (I'm sure most on here have that problem!). All of these I had as a child but have only recently put two and two together.

Relationships... A difficulty understanding of others and my own emotions, lack of empathy , my wife being the only person I'm really comfortable hanging out with (which has out massive strains on her being very sociable) as well as other things I don't wish to put on a public forum.

Hope that explains a little...

Sent from Somerset using magic

To be fair - I can relate to this and a couple of people have enquired if I maybe also on a spectrum of sorts. But then I can see how I believe most people can easily relate to some of the things you have suggested as indicators.

I genuinely hope the diagnosis helps.

 

[Paul_B]

Can I just ask, did your GP really diagnose you or referred you for a diagnosis? I'm probably being insensitive here but with a lot of spectrums and disorders they do not diagnose only express a view that it's possible then refer you to a specialist who is the only one in the system that can diagnose.

In case I'm causing offence I'll explain my situation. Long drawn out story but I match a lot of the criteria for ADHD. I've gone to my GP and she expressed a view and opened the gates with a referral. That's the system and TBH the GP shouldn't have diagnosed ASD if he/she did.

I do wish you well in getting your diagnosis. Persistence is key. I kind of gave up. Possibly a function of my ADHD if that's what I've got. There's probably a lot of disorders and spectrums that have most of the specialists set up for diagnosis for children but not much for adults. There's a lot of people like you who got by until adulthood with a non-neurotypical condition.

 

[swotty]

No offence taken...

My doctor's words were he certainly believes that is what it is and yes, has referred me (I have also seen a counsellor with experience in this field who believes this to be the case). Unfortunately there is an 18month waiting list at the moment for any assessment and until assessed there is no help by which time my marriage will almost certainly be over...I will be seeing a counsellor privately.

Sent from Somerset using magic

 

[Paul_B]

It's not a good situation that it took X number of years and 2 or 3 marriages to get a diagnosis and help. That's adult social care and mental health services for you. If that's what such a diagnosis is.

It would appear that adult ASD assessment has similar waiting times as ADHD. I know more about ADHD diagnosis that ASD. Basically ADHD you have to go private to get a diagnosis as an adult. Your GP has to refer you which is the first hurdle. They do not know how to find out who to refer to so you'll likely get sent to any mental health service in their commissioning area that they can find. Usually anxiety and depression. They will likely talk to you over the telephone to assess you. In my case 40 minutes of trying to get me to accept I've got anxiety/depression problems. Not me! I simply don't get down. I'm not wired that way so will never accept that. 40 minutes in and she said it sounds like ADHD and I'll try to find a service. Went off for an hour then called back to say nobody in the service has a clue where to direct me and I should go back to the go.

I had got over the crisis that led me to make a move. Knew more about it than my GP. I got help from fellow sufferers on an international ADHD forum. Whilst they're no m substitute for medical assessment n and treatment they are a great source of people's stories. You're not the first in your position.

In my case I learnt the story of a very successful academic professor who at the end of her career, when she was likely an emeritus professor given an office and semi retired, got diagnosed as having ADHD. Her intelligence and success masked her condition plus they didn't have it when she was a kid to get a childhood diagnosis. Also hard to interview people who know you from childhood to get the anecdotal evidence that you had symptoms as a kid.

BTW it's good there's an NHS ASD service. From my ADHD forum days I learnt of two adult diagnosis specialists in the NHS and they went private only for diagnosis of ADHD while I was waiting for a referral to a depression service thinking I was getting ADHD referral. Once assessed and diagnosed privately you get your treatment through your GP under the specialists guidance. They work together to stabilise and treat you. I would expect ASD is similar.

BTW ADHD and ASD often appear as co-morbidities. That's basically when people with ADHD also have ASD. Other co-morbidities can be bi-polar conditions or whatever it's now called. It's an interesting area these conditions and disorders. You'll probably learn that it's more common than widely known. I'm probably on the spectrum.

 

[Paul_B]

Sorry for the essay! It's an area I'm kind of passionate and annoyed at the lack of services so I go on a bit too much.

ASD was on a BBC documentary bac few years ago. They assessed a random set of volunteers and found the ASD to be higher. Plus the research it was based on showed that ASD has super powers as much as lowered function. People who go through the day but just want to get home, have a shower or but bath and be alone. Well that's often am ASD based crisis where everyday life has overwhelmed you.

With ASD some have heightened abilities. For example some can hear electricity!! Others can find utility pipes like they've got an extra sense. Then there's the ability to hyper focus. There's a Canadian tech company who has expanded from Canada to be a global player in debugging code. Their success is due in no small part to employing mostly people with ASD and other disorders. Apparently people with ASD who are still functional often have great abilities to concentrate and focus on line after like of code. They can keep going longer without breaks and have fewer missed errors or mistakes. As in something like 90% accuracy compared to 60% fit neurotypicals (NTs).

I for one would love to hear back from you after your referral. It that's not too personal and private. You have been open in here and people are supportive I think. I think how you get on could give me the kick up the 'arris I need to act myself. It's not good someone with two degrees is approaching 50 on not much more than minimum wage. That's where my problems got me. Issues like these really affects you deep into your life and what matters. Good luck in your journey and don't ever give up like I did!!

 

[TeeDee]

This sprang to mind.

 

[nigelp]

Ironic!

 

[Damascus]

I did the test a few years ago and according to the result I should speak to a doctor, I’m not making fun here because it has caused issues with me over the years and my children make a joke of it, for me things have to be right, squared away and I do not like untidiness.
I joined the army as a youth, those issues fitted in just right and settled in to routine like a duck to water. So always look on the positives!

 

[Paul_B]

Too true!

Self diagnosis has a fool as both patient and doctor!

So far I'm in the position of the OP except I've had one irrelevant contact with mental health services then gave up. My GP made the very informal diagnosis like the OP's GP. I then got my referral to the wrong service. Then gave up.

 

[Paul_B]

I did the test a few years ago and according to the result I should speak to a doctor, I’m not making fun here because it has caused issues with me over the years and my children make a joke of it, for me things have to be right, squared away and I do not like untidiness.
I joined the army as a youth, those issues fitted in just right and settled in to routine like a duck to water. So always look on the positives!

Test for ASD? There's a lot of online tests for autism, ADHD, etc. You need to take care with them. With ADHD some are good indicators but others are junk to be avoided. Similar to online IQ tests. I've done a couple of ADHD online tests including one recommended on an ADHD forum from a poster who happened to be a psychologist. I came out strongly ADHD.

BTW one last piece of advice, look into a forum for autism wanted ASD. I know there's a very good ADHD forum as I was a member once. That site had people who have the disorder and medical practitioners who treat/help manage it for their patients. Plus some super sufferers. By this I mean people who have the disorder but turned into big students of it.

As I said upthread, there was an academic on one forum who got a very late diagnosis. She then went into full academic research mode and studied it through the research literature. She was an amazing font of knowledge. I can't remember what her research area was but after semi retirement she basically became an expert on ADHD. She could hold her own with psychologists who work treating the disorder. Whether it's chemical treatment including options, doses, etc or behavioural treatments.

You have to be selective on who and what you listen to on such forums though.

 

[Redhand Jack]

Your in good company @swotty I'm damn sure I'm on the spectrum and my cousin definitely is, but then my uncle has every train ticket he's ever bought in shoe boxes in the loft, so it was kinda expected...
Just like depression, the more you talk about it the more you realize your not the only one, post #6 could easily be my life story

 

[Nice65]

Chris Packham? Personally I think he should live on his own, but that’s just me objecting to him using the BBC as a political platform to rant.

I reckon many of us are autistic to an extent. On the forums over the years, and in life generally I’ve seen a lot of ‘over’ engineering, collecting, reviewing, obsessing etc. Applying a name to a keen interest can create a problem out of nothing but keen interest, in my opinion.

However, the higher end of the spectrum, and Aspergers, can be an utter misery and mystery, both to the person that has it, and those around them. I hesitate to call anyone ‘sufferers’, more misunderstood. In those cases, a diagnosis is a blessing and the beginning of an understanding of the invisible obstacle.

Of the syndromes, should you need an excuse for being organised, moody, obsessive, a bit nerdy, clumsy, brainy, anti-social just do some super power swearing and say it’s Tourette’s. Works for me whatever the occasion.

 

[The Frightful]

A good friend of mine has a 6 year old who was diagnosed autistic at about 3. The specialist told my mate that as much as one in 3 are on the spectrum to a lesser or greater degree. Guessing a lot of global pioneers, inventors etc were probably on it too #goodcompany

 

[TeeDee]

Chris Packham? Personally I think he should live on his own, but that’s just me objecting to him using the BBC as a political platform to rant.

I reckon many of us are autistic to an extent. On the forums over the years, and in life generally I’ve seen a lot of ‘over’ engineering, collecting, reviewing, obsessing etc. Applying a name to a keen interest can create a problem out of nothing but keen interest, in my opinion.

However, the higher end of the spectrum, and Aspergers, can be an utter misery and mystery, both to the person that has it, and those around them. I hesitate to call anyone ‘sufferers’, more misunderstood. In those cases, a diagnosis is a blessing and the beginning of an understanding of the invisible obstacle.

Of the syndromes, should you need an excuse for being organised, moody, obsessive, a bit nerdy, clumsy, brainy, anti-social just do some super power swearing and say it’s Tourette’s. Works for me whatever the occasion.

Just wondering what the gender percentage split maybe on Aspergers?

Alot of the things Swotty and yourself have mentioned Nice sound to me to be quite ( stereotypical ) Male characteristics.

I can imagine alot of Men scoring higher on the self diagnosis test than Women.