The autism thread
Discussion
How are the other parents who've been on this thread?
We had a pretty s
t time a couple of years ago, after my dad died. My youngest ended up attempting suicide a couple of times, quite dramatically on one occasion, trying to throw herself in front of traffic whilst we chased her, trying to stop her. The police ended up involved, after a witness called them out. Each time she'd go off at the deep end we'd end up with a hospital admission so that she could be seen by the crisis team(who don't work out of hours).
Anyhoo, the third admission did the trick with her getting both a psychiatrist and psychologist. And that helped massively. Then we all got COVID. My youngest recovered the quickest but due to our location we couldn't get her to school because taxis just don't want to come out this far - and her best friend's mum offered to let her stay with them instead. And between staying off and on with her best friend family for the next few years, and the help she'd eventually had from CAHMS, we've really turned a corner. She didn't really leave school with anything (a couple of 3's despite extra tuition), she's now at college. Her attendance is now about 70% (as opposed to 19% for year 11), and she gets herself to college without being bullied into it. She's studying a level 1 course at college which she actually appears to enjoy and she's also predicted 5s in English and maths. Best of all, she's not raging at us all the time. Her best friend is extremely placid and somehow some of that pragmatism has started to rub off on her.
Our eldest is in 2nd year of uni, studying fine art, and on line for a good 2:1. She struggles massively with generalised anxiety disorder alongside her autism, but she's conscientious and hard working, and living semi-independently. And at 19 she'd already decided to set up herself with a pension!
What a difference a few years make.
I hope all of the other parents have seen their kids blossom in one way or another.
We had a pretty s
t time a couple of years ago, after my dad died. My youngest ended up attempting suicide a couple of times, quite dramatically on one occasion, trying to throw herself in front of traffic whilst we chased her, trying to stop her. The police ended up involved, after a witness called them out. Each time she'd go off at the deep end we'd end up with a hospital admission so that she could be seen by the crisis team(who don't work out of hours).Anyhoo, the third admission did the trick with her getting both a psychiatrist and psychologist. And that helped massively. Then we all got COVID. My youngest recovered the quickest but due to our location we couldn't get her to school because taxis just don't want to come out this far - and her best friend's mum offered to let her stay with them instead. And between staying off and on with her best friend family for the next few years, and the help she'd eventually had from CAHMS, we've really turned a corner. She didn't really leave school with anything (a couple of 3's despite extra tuition), she's now at college. Her attendance is now about 70% (as opposed to 19% for year 11), and she gets herself to college without being bullied into it. She's studying a level 1 course at college which she actually appears to enjoy and she's also predicted 5s in English and maths. Best of all, she's not raging at us all the time. Her best friend is extremely placid and somehow some of that pragmatism has started to rub off on her.
Our eldest is in 2nd year of uni, studying fine art, and on line for a good 2:1. She struggles massively with generalised anxiety disorder alongside her autism, but she's conscientious and hard working, and living semi-independently. And at 19 she'd already decided to set up herself with a pension!
What a difference a few years make.
I hope all of the other parents have seen their kids blossom in one way or another.
solo2 said:
Can I ask how many of you think Autism is genetic?
I know my opinion but just curious on others. I can google for the internet opinion but what I'm asking is does it run in your families or not.
My partner is autistic, her dad 100% is (albeit undiagnosed) and his dad too quite obviously to us, but again, undiagnosed.I know my opinion but just curious on others. I can google for the internet opinion but what I'm asking is does it run in your families or not.
A former colleague who is, I haven't met his dad but from what he describes of him I would not be surprised at all, he certainly isn't typical in many ways.
Another acquaintance who is autistic, his dad is too.
So yeah, I'd certainly assume genetic. A completely different functioning of the brain seems a hard thing to nurture in to someone
Was trying to explain to my dad about my autism and he kept saying "yeah but I'm like that", and I was thinking yes because you are also. Pretty sure both my kids are, eldest is very similar to me, youngest has a lot more sensory issues.
Regarding the discussion about marriage, my traits I think contributed to the breakup of my marriage, but also my wifes ADHD did as well. Since I've moved out I have realised Im far better living on my own.
Regarding the discussion about marriage, my traits I think contributed to the breakup of my marriage, but also my wifes ADHD did as well. Since I've moved out I have realised Im far better living on my own.
solo2 said:
Can I ask how many of you think Autism is genetic?
I know my opinion but just curious on others. I can google for the internet opinion but what I'm asking is does it run in your families or not.
I reckon about 60-70% if not more, with the more coming in as people whos parents exhibit traits but may not meet diagnostic threshold.I know my opinion but just curious on others. I can google for the internet opinion but what I'm asking is does it run in your families or not.
tim jb said:
As you're ASD - why ask? I can only imagine to disagree for some reason, argue otherwise or seek conflict.
ASD = problems with social interactions and communication; of which you're aware being ASD diagnosed.
By that autists don't, or rarely marry or socialise well. Most are unemployable. If they gain employment it's usually unsustainable.
Autism is fking horrible; if I had to sum it up in two words - 'death sentence'. If you've not experienced life-curtailing problems you're probably not ASD.
I also dont like the term Autists. ASD = problems with social interactions and communication; of which you're aware being ASD diagnosed.
By that autists don't, or rarely marry or socialise well. Most are unemployable. If they gain employment it's usually unsustainable.
Autism is f
king horrible; if I had to sum it up in two words - 'death sentence'. If you've not experienced life-curtailing problems you're probably not ASD. The stats back what you are saying up to a certain extent, more autistic people are under/unemployed than are employed, although this stat could quite easily be challenged as the employed ones are more likely to be undiagnosed. Similarly the early death aspect, could again be skewed by socio economic outcomes related to under/unemployment. So whilst I empathise with what you are saying, I think you are over egging it.
Where I think you are plain wrong is saying "If you've not experienced life-curtailing problems you're probably not ASD". it's also very dismissive; why would people go to the trouble of getting a diagnosis when the diagnosis itself is so negative. For most people its explains who they are, it certainly doesn't make life any easier. You will find most of the people who hold down marriages and jobs, are masking like hell. This masking keeps most under the radar.. This also means they are undiagnosed or are late diagnosed.
Masking is learnt behaviour from quite an early age and often about self-preservation, avoiding bullying or attack. Factors for success in masking are in my opinion related to :-
- general intelligence (some research to back this up)
- parental influence in teaching and coaching, either actively correcting 'unnacceptable behaviour' or by modeling and rewarding 'correct behaviour'. This could be in the knowledge of autism or accidentally without knowledge (my theory)
- Parental indifference to 'bad/unnacceptable' behaviour, possibly linked to parents socio economic status, which again may be impacted by their own autism (my theory)
- the persons success feedback loop in masking - better results = more trying = better success. Equally, repeated failure could result in giving up on a masking strategy (my theory)
- the persons willingness or lack of willingness to accept the negatives and consequences of masking. I have a long held belief that this is a key driver for the 'loners'. They would love to have friends, go out etc, but cannot/do not want to handle the consequences. I don't think being a 'loner' is an active choice, but a choice forced on them by society. (my theory)
- women tend to be better at masking than men
I'd love to do some research into Masking but don't really have the time or skill set.
Also don't forget a higher prevalence co-occurring conditions e.g. Dyslexia, which may or may not be diagnosed, may also limit a persons success
I am autistic, diagnosed in my 40's. I hold down a good job in most peoples eyes, and I am 3 months off my 30th Wedding Anniversary.
I have 2 autistic kids, diagnosed at 15 and 17. Both went to Uni, one is a teacher married with a 2 year old and the other is 1 year into her first job and engaged. Their success is largely due to my wife's support and guidance and maybe my own modelling. All three of us struggle at some point, it would be wrong to say everything is hunky dory, but to say they probably don't have ASD, is equally disingenuous.
sparkyhx said:
I also dont like the term Autists.
"Auties" is the one I've seen used in the communities. "Aspies" where relevant.I'd think it should be clear from the thread that there's a huge range of experiences of being autistic. Some have huge support needs throughout life. Some of us are hidden, often until a crisis of some sort. But any "abandon all hope" message is surely bad for everyone.
Hi All,
I’ve documented on other health topics previously about my now 15 year old daughter.
She suffers (and I will use suffer despite what others may think) from Quadriplegic cerebral palsy. So briefly difficulty with walking, talking, eating, dressing.
She has been self harming since the age of 11 and as she gets older this is getting more violent. Punching herself, pulling her hair out, head butting walls and anything else, attempting to cut herself and yesterday tried to run out into the road.
She is violent to her mum and me. She cannot accept change to plans, is extremely self conscious about her disabilities, and almost shrinks within herself when in public and just does not want anyone to see or acknowledge her.
She was accepted into CAHMS, and part of the discussion was about being investigated for Autism. Cut a very long story short, this diagnosis was confirmed.
On one hand we were upset but on the other it gave us some sort of answer as to what was happening, we thought it was due to her brain injury suffered at birth.
It’s very difficult but for all of us, the physical disabilities are easier to cope with, the mental side is hard work, draining, creating real strains on home life.
What the future holds, who knows. We are in the fortunate position that we have a very comfortable home life, and can provide anything she needs or wants to make her life easier. I can’t imagine how difficult it would be if we couldn’t do that.
Anyway I am rambling now, don’t know the point of all this but I have the complete respect for all of us that deal with this everyday. I’m a bit upset now so I will leave it at that.
I’ve documented on other health topics previously about my now 15 year old daughter.
She suffers (and I will use suffer despite what others may think) from Quadriplegic cerebral palsy. So briefly difficulty with walking, talking, eating, dressing.
She has been self harming since the age of 11 and as she gets older this is getting more violent. Punching herself, pulling her hair out, head butting walls and anything else, attempting to cut herself and yesterday tried to run out into the road.
She is violent to her mum and me. She cannot accept change to plans, is extremely self conscious about her disabilities, and almost shrinks within herself when in public and just does not want anyone to see or acknowledge her.
She was accepted into CAHMS, and part of the discussion was about being investigated for Autism. Cut a very long story short, this diagnosis was confirmed.
On one hand we were upset but on the other it gave us some sort of answer as to what was happening, we thought it was due to her brain injury suffered at birth.
It’s very difficult but for all of us, the physical disabilities are easier to cope with, the mental side is hard work, draining, creating real strains on home life.
What the future holds, who knows. We are in the fortunate position that we have a very comfortable home life, and can provide anything she needs or wants to make her life easier. I can’t imagine how difficult it would be if we couldn’t do that.
Anyway I am rambling now, don’t know the point of all this but I have the complete respect for all of us that deal with this everyday. I’m a bit upset now so I will leave it at that.
sir humphrey appleby said:
Hi All,
I’ve documented on other health topics previously about my now 15 year old daughter.
She suffers (and I will use suffer despite what others may think) from Quadriplegic cerebral palsy. So briefly difficulty with walking, talking, eating, dressing.
She has been self harming since the age of 11 and as she gets older this is getting more violent. Punching herself, pulling her hair out, head butting walls and anything else, attempting to cut herself and yesterday tried to run out into the road.
She is violent to her mum and me. She cannot accept change to plans, is extremely self conscious about her disabilities, and almost shrinks within herself when in public and just does not want anyone to see or acknowledge her.
She was accepted into CAHMS, and part of the discussion was about being investigated for Autism. Cut a very long story short, this diagnosis was confirmed.
On one hand we were upset but on the other it gave us some sort of answer as to what was happening, we thought it was due to her brain injury suffered at birth.
It’s very difficult but for all of us, the physical disabilities are easier to cope with, the mental side is hard work, draining, creating real strains on home life.
What the future holds, who knows. We are in the fortunate position that we have a very comfortable home life, and can provide anything she needs or wants to make her life easier. I can’t imagine how difficult it would be if we couldn’t do that.
Anyway I am rambling now, don’t know the point of all this but I have the complete respect for all of us that deal with this everyday. I’m a bit upset now so I will leave it at that.
I know that feeling well when my daughter was struggling. It does get better, understanding the situation, and understanding of herself will make a difference. Best of luckI’ve documented on other health topics previously about my now 15 year old daughter.
She suffers (and I will use suffer despite what others may think) from Quadriplegic cerebral palsy. So briefly difficulty with walking, talking, eating, dressing.
She has been self harming since the age of 11 and as she gets older this is getting more violent. Punching herself, pulling her hair out, head butting walls and anything else, attempting to cut herself and yesterday tried to run out into the road.
She is violent to her mum and me. She cannot accept change to plans, is extremely self conscious about her disabilities, and almost shrinks within herself when in public and just does not want anyone to see or acknowledge her.
She was accepted into CAHMS, and part of the discussion was about being investigated for Autism. Cut a very long story short, this diagnosis was confirmed.
On one hand we were upset but on the other it gave us some sort of answer as to what was happening, we thought it was due to her brain injury suffered at birth.
It’s very difficult but for all of us, the physical disabilities are easier to cope with, the mental side is hard work, draining, creating real strains on home life.
What the future holds, who knows. We are in the fortunate position that we have a very comfortable home life, and can provide anything she needs or wants to make her life easier. I can’t imagine how difficult it would be if we couldn’t do that.
Anyway I am rambling now, don’t know the point of all this but I have the complete respect for all of us that deal with this everyday. I’m a bit upset now so I will leave it at that.
LosingGrip said:
My sister's have autism. They are both at uni and isn't that severe, but when they both got the report it made a lot of sense.
When I was younger my mum struggled with me, she took me to the doctors but nothing was ever diagnosed, but having read my sister's reports...I clearly have it as well. I struggle with certain things. But have my own ways of dealing with situations I don't like.
I've started the process of getting diagnosed. Mainly to have some answers for myself but also for if I need any support at work. When I was younger my mum struggled with me, she took me to the doctors but nothing was ever diagnosed, but having read my sister's reports...I clearly have it as well. I struggle with certain things. But have my own ways of dealing with situations I don't like.
Not impressed with the first step...phone call from the doctor. 45 minutes late. Clearly wasn't interested.
Soon as I mentioned it was to see what support I could get at work she wanted me to speak to Occy Health. Urm nope not yet...oh or pay privately. Again nope. She said it would be about £200. A quick Google suggests its £2,000...
She's going to do the referral, but I've got a feeling its going to be a crap experience already.
LosingGrip said:
I've started the process of getting diagnosed. Mainly to have some answers for myself but also for if I need any support at work.
Not impressed with the first step...phone call from the doctor. 45 minutes late. Clearly wasn't interested.
Soon as I mentioned it was to see what support I could get at work she wanted me to speak to Occy Health. Urm nope not yet...oh or pay privately. Again nope. She said it would be about £200. A quick Google suggests its £2,000...
She's going to do the referral, but I've got a feeling its going to be a crap experience already.
I'm planning on starting the formal diagnosis route myself shortly but luckily it is covered as of this year as part of my work health insurance. I feel like there is just a lack of interest in adult diagnosis through the NHS route. Not impressed with the first step...phone call from the doctor. 45 minutes late. Clearly wasn't interested.
Soon as I mentioned it was to see what support I could get at work she wanted me to speak to Occy Health. Urm nope not yet...oh or pay privately. Again nope. She said it would be about £200. A quick Google suggests its £2,000...
She's going to do the referral, but I've got a feeling its going to be a crap experience already.
The NHS don't seem to be great for child diagnosis either as both my kids are on the waiting list with the oldest approaching about 3 years so far and seemingly no further forward. Thankfully we are able to access some support on account of a suspected diagnosis when it comes to school etc.
I'm not sure my own diagnosis will help me much but I hope that it will at least show my kids that it is possible to have a good job and long marriage despite the difficulties they might be having and that they don't need to write off their dreams on account of whatever their results are.
John87 said:
I'm planning on starting the formal diagnosis route myself shortly but luckily it is covered as of this year as part of my work health insurance. I feel like there is just a lack of interest in adult diagnosis through the NHS route.
The NHS don't seem to be great for child diagnosis either as both my kids are on the waiting list with the oldest approaching about 3 years so far and seemingly no further forward. Thankfully we are able to access some support on account of a suspected diagnosis when it comes to school etc.
I'm not sure my own diagnosis will help me much but I hope that it will at least show my kids that it is possible to have a good job and long marriage despite the difficulties they might be having and that they don't need to write off their dreams on account of whatever their results are.
My partner has been trying to get her son diagnosed for years. She is finally getting somewhere. The NHS said due to backlogs they are going to send him to a private company that they'll pay for. The forms have been sent off by the school (but thats another issue...the teacher who filled it in was his old teacher who didn't like him, not his current teacher or his one to one that his EHCP says he needs due to autism...). The NHS don't seem to be great for child diagnosis either as both my kids are on the waiting list with the oldest approaching about 3 years so far and seemingly no further forward. Thankfully we are able to access some support on account of a suspected diagnosis when it comes to school etc.
I'm not sure my own diagnosis will help me much but I hope that it will at least show my kids that it is possible to have a good job and long marriage despite the difficulties they might be having and that they don't need to write off their dreams on account of whatever their results are.
LosingGrip said:
I've started the process of getting diagnosed. Mainly to have some answers for myself but also for if I need any support at work.
Not impressed with the first step...phone call from the doctor. 45 minutes late. Clearly wasn't interested.
Soon as I mentioned it was to see what support I could get at work she wanted me to speak to Occy Health. Urm nope not yet...oh or pay privately. Again nope. She said it would be about £200. A quick Google suggests its £2,000...
She's going to do the referral, but I've got a feeling its going to be a crap experience already.
I'm trying to go down a similar path for similar reasons, I've been diagnosed with OCPD and other stuff in the past and that covers a lot of my "things" but I feel like there's a bit more to it Not impressed with the first step...phone call from the doctor. 45 minutes late. Clearly wasn't interested.
Soon as I mentioned it was to see what support I could get at work she wanted me to speak to Occy Health. Urm nope not yet...oh or pay privately. Again nope. She said it would be about £200. A quick Google suggests its £2,000...
She's going to do the referral, but I've got a feeling its going to be a crap experience already.
Work offer an amazing Neurodiversity Pathway scheme through Aviva... if you're a high enough grade manager / Director, the rest of us get a chance to claim back a couple of hundred quid a year towards consultant costs.
Work are very keen on "awareness" of many things but when it comes to the crunch there's really nothing of note behind the glossy PowerPoints, working groups and web pages. They do try though, it's better than anywhere else I've worked.
So I went the NHS route through a local non-GP scheme and got a phone call back within a couple of weeks, a good hour long chat with a trainee who took lots of notes then came back a few days later with some self referral links for Autism and ADHD assessments... with 3 to 4 year waiting lists
They said they'd come back with some other help too but I need to fill in a whopper of a form that insists I provide examples from childhood and the name of someone who can vouch for my tales. One of my coping mechanisms has been to obliterate all memories from certain times and lose contact with all my family and friends so I'm immediately thinking I'll be unable to get anywhere with this route. The form seems at odds with the kind of people who would need to complete it.
Good luck with your journey LosingGrip and thanks to everyone else posting here, it's all interesting to follow.
Having just gone through this exact process I can empathise (which is unusual for me!).
The form is printed but clearly designed to be online with the mention of back buttons etc. The main issue is the form filled in by someone who has known you since birth - as mentioned above this is going to be tricky and not reflective for many people.
The form is printed but clearly designed to be online with the mention of back buttons etc. The main issue is the form filled in by someone who has known you since birth - as mentioned above this is going to be tricky and not reflective for many people.
JFReturns said:
Having just gone through this exact process I can empathise (which is unusual for me!).
The form is printed but clearly designed to be online with the mention of back buttons etc. The main issue is the form filled in by someone who has known you since birth - as mentioned above this is going to be tricky and not reflective for many people.
My ex had that issue. Her parents were very dismissive of Autism/ADHD (I mean her dad used to sit watching Tommy Robinson videos on Youtube over the weekend...). She didn't want to speak to them about it. Not sure what happened in the end as we broke up. But it caused her a load of stress. The form is printed but clearly designed to be online with the mention of back buttons etc. The main issue is the form filled in by someone who has known you since birth - as mentioned above this is going to be tricky and not reflective for many people.
I've had the forms turn up today. Only ten questions. Out of the ten questions, I've ticked yes for nine. The only one is do I find social situations confusing. Not confusing but I bloody hate them and avoid them at all costs.
JFReturns said:
Having just gone through this exact process I can empathise (which is unusual for me!).
The form is printed but clearly designed to be online with the mention of back buttons etc. The main issue is the form filled in by someone who has known you since birth - as mentioned above this is going to be tricky and not reflective for many people.
My employer uses the same Avivia scheme. Yes the form is daunting, not just for you but for the person who also has to fill it in.The form is printed but clearly designed to be online with the mention of back buttons etc. The main issue is the form filled in by someone who has known you since birth - as mentioned above this is going to be tricky and not reflective for many people.
My experience of the Avila process has been really positive, went to York for a one hour interview sessions to confirm I am autistic (wow, York parking is expensive!), and the follow up sessions have been great as well.
Worth persevering if you can.
Sporky said:
Thanks for sharing. I had no idea the co-existence of autism and adhd was in any way controversial. I’ve often heard people say that “autism comes with friends” like adhd, pda etcI think it was only controversial in medical circles. On the face of it the two might seem contradictory (as discussed in the article), but the combination would explain how so many manage to hide in plain sight.
I feel more autie than ADHD, but I recognise the descriptions. My wife is the other way 'round, but I'm pretty certain we're both both.
I feel more autie than ADHD, but I recognise the descriptions. My wife is the other way 'round, but I'm pretty certain we're both both.
It's widely spoken about online and seems almost common knowledge so I'm surprised its a big deal.
I only realised that I was autistic about two years ago but now that I understand that its seems to be increasingly easy to see it in other people. Is that other peoples experience? I work for a small company of 14 people and it has completely changed my relationship with the two other people who are now obviously autistic. A customer came in a couple of weeks ago and I thought he was autistic within a couple of minutes.
I only realised that I was autistic about two years ago but now that I understand that its seems to be increasingly easy to see it in other people. Is that other peoples experience? I work for a small company of 14 people and it has completely changed my relationship with the two other people who are now obviously autistic. A customer came in a couple of weeks ago and I thought he was autistic within a couple of minutes.
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