Autistic (undiagnosed or not) Adults Thread

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Sorry for the long, messy post but my head is fried and I don't know who to talk to about this šŸ˜…

So I've got a lot of life experience with autism. My brother was diagnosed when he was a toddler in the 90s and went to special needs schools so we had a lot of family friends through that network with autistic kids. We have also been convinced for years that my mum is autistic after many "really? Is that not normal? But I was like that as a child?" moments during my brother's diagnosis but she has never seen the point in getting an assessment as she doesn't want to take a place from a person in real need.

During a teenage mental breakdown I went from pillar to post in CBT sessions as they concluded I wasn't "depressed" as I apparently "had too much fight in me for a clinically depressed person" but I was also suicidal so I had an elaborate mix of CBT/anger management and counselling all bundled up into a "we don't know what is wrong with you but if this helps?"
Eventually I did feel better but only after moving country for university and basically adapting to my own little life (and a lot of uni partying).
I've since built a career and done really well for myself. I've got an amazing partner who is better than I could have wished for. We moved in together right before covid hit.

Since living with him and with covid and life generally changing in every way possible, I've found it harder to mask those worries that I had kept at bay with my little way of doing things. I used to have "ipod time" as a teenager where I listened to emo music at full blast on my ipod nano whilst pacing the upstairs landing in the dark. My family understood this completely and would simply flick the light on when it was time for tea or whatever. In times of extreme stress, I still go back to ipod time as an adult. It is my ultimate comfort blanket. My partner tries to understand but doesn't quite get this and other things I do to calm. When talking to other people, they don't tend to either.

There's lots of other little things like this that I could list off but overall, the only people who seem to understand these traits are my family (1 confirmed autistic person and 1 highly suspected) and one of my colleagues, who was diagnosed with autism and ADHD a few years back after a mental breakdown very like the one I had over a decade ago.

This in addition to many articles etc that I am relating too way too much are now causing me brain fog with the "am I? Aren't I?" Thoughts. I would love to get diagnosed and find out if I am or not. I don't really care either option it would find to be honest, I just want clarity to stop my brain twisting things.

Does anyone know of any private referrals that are actually assessments and not a glorified online quiz? Like my mum, I don't want to take the place of a kid like my brother was who really needs it but I am anxious.

Thank you if you got this far šŸ’“
 
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Sorry for the long, messy post but my head is fried and I don't know who to talk to about this šŸ˜…

So I've got a lot of life experience with autism. My brother was diagnosed when he was a toddler in the 90s and went to special needs schools so we had a lot of family friends through that network with autistic kids. We have also been convinced for years that my mum is autistic after many "really? Is that not normal? But I was like that as a child?" moments during my brother's diagnosis but she has never seen the point in getting an assessment as she doesn't want to take a place from a person in real need.

During a teenage mental breakdown I went from pillar to post in CBT sessions as they concluded I wasn't "depressed" as I apparently "had too much fight in me for a clinically depressed person" but I was also suicidal so I had an elaborate mix of CBT/anger management and counselling all bundled up into a "we don't know what is wrong with you but if this helps?"
Eventually I did feel better but only after moving country for university and basically adapting to my own little life (and a lot of uni partying).
I've since built a career and done really well for myself. I've got an amazing partner who is better than I could have wished for. We moved in together right before covid hit.

Since living with him and with covid and life generally changing in every way possible, I've found it harder to mask those worries that I had kept at bay with my little way of doing things. I used to have "ipod time" as a teenager where I listened to emo music at full blast on my ipod nano whilst pacing the upstairs landing in the dark. My family understood this completely and would simply flick the light on when it was time for tea or whatever. In times of extreme stress, I still go back to ipod time as an adult. It is my ultimate comfort blanket. My partner tries to understand but doesn't quite get this and other things I do to calm. When talking to other people, they don't tend to either.

There's lots of other little things like this that I could list off but overall, the only people who seem to understand these traits are my family (1 confirmed autistic person and 1 highly suspected) and one of my colleagues, who was diagnosed with autism and ADHD a few years back after a mental breakdown very like the one I had over a decade ago.

This in addition to many articles etc that I am relating too way too much are now causing me brain fog with the "am I? Aren't I?" Thoughts. I would love to get diagnosed and find out if I am or not. I don't really care either option it would find to be honest, I just want clarity to stop my brain twisting things.

Does anyone know of any private referrals that are actually assessments and not a glorified online quiz? Like my mum, I don't want to take the place of a kid like my brother was who really needs it but I am anxious.

Thank you if you got this far šŸ’“
Hi, can I ask where you're located?
In Ireland there are very few, if any, public assessments, and children would be separate to adults, so you wouldn't be taking the place of a more needed person (although really if you find it is affecting you then I would say your equally in need, you might not have as high support needs as others, but it is impacting your life not in a totally positive way at the minute) I can help if you're in Ireland in suggesting what next, as it's private options. Hopefully someone else can help if you're in the UK
 
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Hi, can I ask where you're located?
In Ireland there are very few, if any, public assessments, and children would be separate to adults, so you wouldn't be taking the place of a more needed person (although really if you find it is affecting you then I would say your equally in need, you might not have as high support needs as others, but it is impacting your life not in a totally positive way at the minute) I can help if you're in Ireland in suggesting what next, as it's private options. Hopefully someone else can help if you're in the UK
Hey! I'm actually originally from N.Ireland but I now live in England so I imagine it might be different? I had a look online at some things but there seems to be a lot of information about private assessments not always being NHS certified or whatever and not so much about finding private proper doctor referrals? Unfortunately, I've seen autism become a bit of a bandwagon over here and with that, lots of these "Are you autistic? Pay Ā£200 to take our online quiz and get a certificate!" type sites pop up šŸ˜¬

Also, thank you for your message ā¤
 
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Sorry for the long, messy post but my head is fried and I don't know who to talk to about this šŸ˜…

So I've got a lot of life experience with autism. My brother was diagnosed when he was a toddler in the 90s and went to special needs schools so we had a lot of family friends through that network with autistic kids. We have also been convinced for years that my mum is autistic after many "really? Is that not normal? But I was like that as a child?" moments during my brother's diagnosis but she has never seen the point in getting an assessment as she doesn't want to take a place from a person in real need.

During a teenage mental breakdown I went from pillar to post in CBT sessions as they concluded I wasn't "depressed" as I apparently "had too much fight in me for a clinically depressed person" but I was also suicidal so I had an elaborate mix of CBT/anger management and counselling all bundled up into a "we don't know what is wrong with you but if this helps?"
Eventually I did feel better but only after moving country for university and basically adapting to my own little life (and a lot of uni partying).
I've since built a career and done really well for myself. I've got an amazing partner who is better than I could have wished for. We moved in together right before covid hit.

Since living with him and with covid and life generally changing in every way possible, I've found it harder to mask those worries that I had kept at bay with my little way of doing things. I used to have "ipod time" as a teenager where I listened to emo music at full blast on my ipod nano whilst pacing the upstairs landing in the dark. My family understood this completely and would simply flick the light on when it was time for tea or whatever. In times of extreme stress, I still go back to ipod time as an adult. It is my ultimate comfort blanket. My partner tries to understand but doesn't quite get this and other things I do to calm. When talking to other people, they don't tend to either.

There's lots of other little things like this that I could list off but overall, the only people who seem to understand these traits are my family (1 confirmed autistic person and 1 highly suspected) and one of my colleagues, who was diagnosed with autism and ADHD a few years back after a mental breakdown very like the one I had over a decade ago.

This in addition to many articles etc that I am relating too way too much are now causing me brain fog with the "am I? Aren't I?" Thoughts. I would love to get diagnosed and find out if I am or not. I don't really care either option it would find to be honest, I just want clarity to stop my brain twisting things.

Does anyone know of any private referrals that are actually assessments and not a glorified online quiz? Like my mum, I don't want to take the place of a kid like my brother was who really needs it but I am anxious.

Thank you if you got this far šŸ’“
Iā€™m in the England and Adult & Child Assessments are completely different so you certainly wouldnā€™t be taking the place of a child.

My son was diagnosed about 8 years ago (late for a child as we didnā€™t have the right support) I was diagnosed about 2 years ago. Both were NHS diagnosis and I waited over 2 years on the list. There are several processes to the assessment. Itā€™s not made a huge difference to my life day to day, but it does help me understand the why?.

Have a word with your GP and ask for a referral.

Good luck xx
 
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Sorry for the long, messy post but my head is fried and I don't know who to talk to about this šŸ˜…

So I've got a lot of life experience with autism. My brother was diagnosed when he was a toddler in the 90s and went to special needs schools so we had a lot of family friends through that network with autistic kids. We have also been convinced for years that my mum is autistic after many "really? Is that not normal? But I was like that as a child?" moments during my brother's diagnosis but she has never seen the point in getting an assessment as she doesn't want to take a place from a person in real need.

During a teenage mental breakdown I went from pillar to post in CBT sessions as they concluded I wasn't "depressed" as I apparently "had too much fight in me for a clinically depressed person" but I was also suicidal so I had an elaborate mix of CBT/anger management and counselling all bundled up into a "we don't know what is wrong with you but if this helps?"
Eventually I did feel better but only after moving country for university and basically adapting to my own little life (and a lot of uni partying).
I've since built a career and done really well for myself. I've got an amazing partner who is better than I could have wished for. We moved in together right before covid hit.

Since living with him and with covid and life generally changing in every way possible, I've found it harder to mask those worries that I had kept at bay with my little way of doing things. I used to have "ipod time" as a teenager where I listened to emo music at full blast on my ipod nano whilst pacing the upstairs landing in the dark. My family understood this completely and would simply flick the light on when it was time for tea or whatever. In times of extreme stress, I still go back to ipod time as an adult. It is my ultimate comfort blanket. My partner tries to understand but doesn't quite get this and other things I do to calm. When talking to other people, they don't tend to either.

There's lots of other little things like this that I could list off but overall, the only people who seem to understand these traits are my family (1 confirmed autistic person and 1 highly suspected) and one of my colleagues, who was diagnosed with autism and ADHD a few years back after a mental breakdown very like the one I had over a decade ago.

This in addition to many articles etc that I am relating too way too much are now causing me brain fog with the "am I? Aren't I?" Thoughts. I would love to get diagnosed and find out if I am or not. I don't really care either option it would find to be honest, I just want clarity to stop my brain twisting things.

Does anyone know of any private referrals that are actually assessments and not a glorified online quiz? Like my mum, I don't want to take the place of a kid like my brother was who really needs it but I am anxious.

Thank you if you got this far šŸ’“
I could have wrote this myself

There is a long waiting list but it's worth seeing a GP. You won't take the place of a kid who needs it providing you're an adult. They are completely separate teams/systems etc.
 
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Thanks all, I really appreciate it. Even just getting all that off my chest has helped a little, and @shadowcat5 I'm glad it's not just me!

I'll give the GP a call and go from there. I really didn't realise child and adult assessments were separate (though I also don't know why I didn't think that? Haha) so that is a relief
 
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Thanks all, I really appreciate it. Even just getting all that off my chest has helped a little, and @shadowcat5 I'm glad it's not just me!

I'll give the GP a call and go from there. I really didn't realise child and adult assessments were separate (though I also don't know why I didn't think that? Haha) so that is a relief
I assume itā€™s the same everywhere but forgive me if itā€™s no. youā€™ll be referred to the adult psychiatrist not the childrenā€™s one. There is also an adult autism referral thing in some counties but idk about all. Ask the GP and they should be able to tell you
 
Weā€™re somewhere in England, and what happens in our area is youā€™d ask the GP for a referral. Then if they are in agreement for making the referral to whoever they use for adult assessments (itā€™s often a private company that has the contract with the trust if they donā€™t have a specific assessment team), the next step is that the GP will have to apply for the funding for it (I canā€™t remember the exact name of it but itā€™s all through the nhs). It can take a while to hear back and when/if the funding is given the go ahead, you get added to the waiting list for an assessment. If you wanted to go private to speed up the process, you could see whether the company your nhs trust has a contract with does private assessments too. Iā€™m not sure if itā€™s the same in all areas but I just wanted to share how it worked where we are so youā€™ve got another example of the how the process might work :)
 
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The waiting lists are a joke. Currently on one for ADHD, I imagine this one will be long as well although I do suspect I have both.
 
I'm waiting for assessment.

A counsellor, then GP and then mental health nurse all hit agreement this year when I hit burnout after spending years trying to be 'normal'.

Currently non-functional, I mean I am, but I'm not.

I'm still learning that it is in fact not normal for everyone to hear electricity etc.

Finally went to optician the other day for sight problems, he said my eyes are perfectly fine, it's a sensory issue šŸ¤¦šŸ¼ā€ā™€ļø (I'm light sensitive).

List goes on and on and on and the docs kept trying to diagnose me with everything under the sun whilst ignoring the fact that it started from birth.

I have the most amazing meltdowns that are so humiliating and the only way to get me out of it is to get me home, shove me through my door and leave me alone for 24 hours.

Anyway, autism is in my family, apparently my having EDS means that I am more likely to have it anyway, I just wish they'd sorted it sooner but, I'm female so I was screwed to begin with diagnosis wise, my brother had no problem.
 
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I think my ā€œmeltdownsā€ are I get really focused on non-negotiable daily routines (cleaning house, gym, x, y, z) and when I donā€™t get to do them Iā€™m overwhelmed and grumpy. I was running on empty today and was short then felt so guilty and it just ruins my weekend. Does anyone else turn into a crank? I feel like itā€™s harder to be this way when youā€™re a woman. I wish I could be more laidback but my mind is always going ten to the dozen. I calm down once Iā€™ve done my routines but because Iā€™m ā€œhigh-functioningā€ people donā€™t get it.
 
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I think my ā€œmeltdownsā€ are I get really focused on non-negotiable daily routines (cleaning house, gym, x, y, z) and when I donā€™t get to do them Iā€™m overwhelmed and grumpy. I was running on empty today and was short then felt so guilty and it just ruins my weekend. Does anyone else turn into a crank? I feel like itā€™s harder to be this way when youā€™re a woman. I wish I could be more laidback but my mind is always going ten to the dozen. I calm down once Iā€™ve done my routines but because Iā€™m ā€œhigh-functioningā€ people donā€™t get it.
I get this. I donā€™t like when plans are changed or something happens that throws me off. Example: I leave my house on time to get to work 5 minutes before I need to be there, but thereā€™s unexpected roadworks outside work, Iā€™m late, not late for work, just late for the time I like to be there by and now Iā€™m irritable and start shutting down. Now I go into work and I am only able to utter a few words to people. I am fine after an hour with my headphones in, but Iā€™m a lot less tolerant of things I could let go.
 
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I think my ā€œmeltdownsā€ are I get really focused on non-negotiable daily routines (cleaning house, gym, x, y, z) and when I donā€™t get to do them Iā€™m overwhelmed and grumpy. I was running on empty today and was short then felt so guilty and it just ruins my weekend. Does anyone else turn into a crank? I feel like itā€™s harder to be this way when youā€™re a woman. I wish I could be more laidback but my mind is always going ten to the dozen. I calm down once Iā€™ve done my routines but because Iā€™m ā€œhigh-functioningā€ people donā€™t get it.
I do this. If I don't get a certain set of things done in a weekend then I'm really down in energy and angry about it all week because I feel like I've failed somehow?
It might even be something random like ive not organised my wardrobe for the next season yet and something in my head has decided this is a non-negotiable
 
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Sorry for the long, messy post but my head is fried and I don't know who to talk to about this šŸ˜…

So I've got a lot of life experience with autism. My brother was diagnosed when he was a toddler in the 90s and went to special needs schools so we had a lot of family friends through that network with autistic kids. We have also been convinced for years that my mum is autistic after many "really? Is that not normal? But I was like that as a child?" moments during my brother's diagnosis but she has never seen the point in getting an assessment as she doesn't want to take a place from a person in real need.

During a teenage mental breakdown I went from pillar to post in CBT sessions as they concluded I wasn't "depressed" as I apparently "had too much fight in me for a clinically depressed person" but I was also suicidal so I had an elaborate mix of CBT/anger management and counselling all bundled up into a "we don't know what is wrong with you but if this helps?"
Eventually I did feel better but only after moving country for university and basically adapting to my own little life (and a lot of uni partying).
I've since built a career and done really well for myself. I've got an amazing partner who is better than I could have wished for. We moved in together right before covid hit.

Since living with him and with covid and life generally changing in every way possible, I've found it harder to mask those worries that I had kept at bay with my little way of doing things. I used to have "ipod time" as a teenager where I listened to emo music at full blast on my ipod nano whilst pacing the upstairs landing in the dark. My family understood this completely and would simply flick the light on when it was time for tea or whatever. In times of extreme stress, I still go back to ipod time as an adult. It is my ultimate comfort blanket. My partner tries to understand but doesn't quite get this and other things I do to calm. When talking to other people, they don't tend to either.

There's lots of other little things like this that I could list off but overall, the only people who seem to understand these traits are my family (1 confirmed autistic person and 1 highly suspected) and one of my colleagues, who was diagnosed with autism and ADHD a few years back after a mental breakdown very like the one I had over a decade ago.

This in addition to many articles etc that I am relating too way too much are now causing me brain fog with the "am I? Aren't I?" Thoughts. I would love to get diagnosed and find out if I am or not. I don't really care either option it would find to be honest, I just want clarity to stop my brain twisting things.

Does anyone know of any private referrals that are actually assessments and not a glorified online quiz? Like my mum, I don't want to take the place of a kid like my brother was who really needs it but I am anxious.

Thank you if you got this far šŸ’“
To update on this, I've got a GP appointment in the morning to discuss.

I had a training course with work the other week where someone pretty much diagnosed me on the call which was awkward but spurred me to actually book the doctors!

Edit: spelling
 
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Hi all. Just want to vent.
I'm suspecting that I might be autistic. There's just so many things that indicate towards that. I have had therapists in the past who have kind a nodded and said 'I thought so' when I had mentioned it. It's mind blowing to me that my whole life I thought that I was a weird, worthless, stupid, ugly etc. outsider, might be something that I can't actually do a lot about, because God knows over the years I have tried very hard to fit in and behave like everyone else. I just cannot seem to do socialising or making and maintaining friendships. I don't know if there's much point in trying to get a diagnosis because I'm tired from trying to get a doctor to take me seriously and they only seem to want to talk to me over the phone and I have a phone phobia, so it's difficult. I already had a conversation with a GP in the summer about my anxiety and they basically sent me some links so I could help myself and advised me to push through the fear. (I have been anxious since I was a child, so I don't think that was the best advice) I think I would absolutely die on the spot if I spoke to them and they dismissed me and told me I was being stupid and how can I think I'm autistic, how ridiculous. Which is what I tell myself but my life is pretty crap right now. I'm feeling fed up of being mentally ill and constantly having to fight it and then being ok for a few weeks and then I'll get into a funk again and have to haul myself out of it and repeats in the same loop. It feel like all the trauma from my past is threatening to swallow me up. Adding autism into the mix, I don't know, feels like it answers some of the ways that I am, that I'm always punishing myself for.
anyway, thanks to anyone who reads this far.
 
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Iā€™ve been apprehensive about going to the doctor about myself but I think Iā€™m going to put on my big girl pants and go for it. Our doctors have an online form so Iā€™m going to submit the request that way
 
For those who don't want to go to the doctor, see if you can go through the Integrated Autism service in your area. it's a self referral with forms that you print off, send them in, they get back to you with a test, send that off, they get back to you with a referral acceptance and then will ring you for an appointment.
 
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I read somewhere that intranasal oxytocin is supposedly helpful for people with autism. Does anyone know anyone who has tried it?
 
Hi all. Just want to vent.
I'm suspecting that I might be autistic. There's just so many things that indicate towards that. I have had therapists in the past who have kind a nodded and said 'I thought so' when I had mentioned it. It's mind blowing to me that my whole life I thought that I was a weird, worthless, stupid, ugly etc. outsider, might be something that I can't actually do a lot about, because God knows over the years I have tried very hard to fit in and behave like everyone else. I just cannot seem to do socialising or making and maintaining friendships. I don't know if there's much point in trying to get a diagnosis because I'm tired from trying to get a doctor to take me seriously and they only seem to want to talk to me over the phone and I have a phone phobia, so it's difficult. I already had a conversation with a GP in the summer about my anxiety and they basically sent me some links so I could help myself and advised me to push through the fear. (I have been anxious since I was a child, so I don't think that was the best advice) I think I would absolutely die on the spot if I spoke to them and they dismissed me and told me I was being stupid and how can I think I'm autistic, how ridiculous. Which is what I tell myself but my life is pretty crap right now. I'm feeling fed up of being mentally ill and constantly having to fight it and then being ok for a few weeks and then I'll get into a funk again and have to haul myself out of it and repeats in the same loop. It feel like all the trauma from my past is threatening to swallow me up. Adding autism into the mix, I don't know, feels like it answers some of the ways that I am, that I'm always punishing myself for.
anyway, thanks to anyone who reads this far.
Thereā€™s a lot of people that, believe in self diagnosis it helps to heal them, I discussed with a doctor during another appointment she was lovely and made me feel safe so I shared my views.


She instantly booked me another appointment to go through the AQ-10. I scored 9. She referred me to the pathway, she was lovely, and explained that although thereā€™s not enough research to suggest that autism is anything to do with genetics, the fact my children are autistic and from what she knows about me she believes I am autistic.

I had never felt so much relieve, Iā€™m also adhd.

So if you feel comfortable with one dr I would suggest doing what I did ā˜ŗ
 
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Just updating this thread to say I have an assessment coming up soon and Iā€™m terrified! Not because Iā€™m afraid of the diagnosis (I know in my bones Iā€™m autistic) but I feel kind of embarrassed to be making a fuss at my age. And about spending all this money going private.

Iā€™m also scared about having to drive to an unfamiliar place which is something I usually flat out refuse to do. So thatā€™s bothering me more than the actual assessment right now.
 
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