Researching ASD for daughter and omg I think I’m autistic!

I’m aware that this may have been said a hundred times over on here (possible more!!) But, yeah... doing my research because it seems our daughter has some ASD traits and that has become a complete runaway rabbit hole of articles, videos, questionnaires for me too. 

II’ve been keeping a list of “things I do” in my phone when they’ve struck me. Can anyone relate to these here? Also, is it worth pursuing a diagnosis for me? My priority is my daughter so I don’t want to get sidetracked. Would it be useful at all to go on the journey together so to speak? 

Here are my little idiosyncrasies...

  • Obsessions about topics. Like TTC or researching something before buying like car seats. The blog when my daughter was first born. The readers digest atlas of the world or Stephen king books or human anatomy books from being a kid. Learning songs and listening to them over and over and over. Guinea pigs. I’m generally known for going to the far end of a fart about things. I do this more when stressed.
  • Feeling like I’ve never connected to anyone. Like, I have friends but never a close friend that I feel a true connection with. Always felt a bit of an outsider on the inside, a bit different but no idea why.
  • Mum took me to the doctors when I was a kid as I never responded to my name. The doctor said I was just good at focusing. Even before I lost my hearing I would unconsciously block out sounds and kind of go inside my own head.
  • People say I lack facial expression. I’m really difficult to read.
  • I’m crap at small talk. I’ve never understood what to say or how people can think of things to say to people they don’t know. Nowadays I just copy what I’ve heard other people say if I feel like I have to.
  • When I was younger I remember pissing off the other kids by taking things too far with a joke - pinching bottoms is the example that sticks in my mind most. Or blowing raspberries at my best friend.
  • I never knew how to make friends. I would never go up to other kids and start playing. My sister did it all the time, but I just didn’t know how.
  • I do a weird breathing thing where I breathe in and out in like a pattern or tune. I do it more when I’m stressed or driving as I can’t rub my feet together then. I also rub my toes and feet together all the time or twitch my thighs. I’ve been trying to stop but it feels weird to do nothing and like I’ll pop if I don’t do it. Maybe because I’m thinking about it too much. Biting the inside of my lips and cheeks.
  • I crack my fingers a lot. More so when I am nervous. I’ve done this pretty much constantly since 8 years old.
  • I’m not interested in celebrities or other people in general. I enjoy being around my friends because I know them, but I don’t like strangers because I don’t know how to interact with them. I have learned what to say but it’s not at all comfortable to me.
  • i think I’m demi sexual I know I’m bisexual 
  • I can’t listen to the radio while I work, it’s too much.
  • I really struggle to keep on top of the housework. I research and implement different strategies, apps on my phone etc, draw up timetables. But it all falls apart really quickly.
  • At a restaurant I get the same thing pretty much every time. Depends on where I go. At an Indian it’s always the same dish. Always the same at the Italian etc.
  • People always comment on how I eat my food. Apparently it’s weird how I cut up small pieces to have the ratios right of what I’m eating.
  • I would collect things to do with hobbies that I’m interested in. Like when I was into scrapbooking and card making I collected so much stuff, literally hundreds of pounds worth and browsed websites, pinned ideas, joined forums etc. Or when I got into cloth nappies I collected tons of them, got into trading them and giving advice on them. Constantly checking selling sites for new ones. When I was addicted to pregnancy testing and bought literally hundreds of tests to test multiple times per day, using different brands and researching sensitivities, taking photos to look for front lines and analysing them for hours.
  • I find it really awkward when people are upset, like when do they expect a hug? I usually just make a joke of being awkward and pat them. It took me ages to hug even my best friends in greeting or to say goodbye. I still have to pep myself up. I do enjoy hugging my husband but it feels awkward to approach him for one and is always awkward when we disengage again.
  • A couple of times in the past when I have been really upset or angry I have slapped my own face to calm me down.
  • When I’m playing the sims on the PC I play the same game over and over. There’s so much to it yet I just keep having babies.
  • I’m pretty oblivious when there’s an “atmosphere” in a room. People will often ask me if I noticed such a such a person giving off a vibe and I’m like uh no.
  • I physically cannot do mental maths. Or any working out under pressure. My brain just flatlines a beeeeeeep and will not cooperate.
  • I have to carry pen and paper around with me and keep lists. If I don’t write something down it doesn’t get done.
  • I never ever handed coursework or homework in on time. I couldn’t just get it done! I would stress and worry but never actually start it.
  • I don’t think about the time. I have learned that I need to start to get ready by X hours before an event, or whatever, but I’m still pretty oblivious to time. Like, it just doesn’t register with me. I’ve tried to keep a log of how long certain tasks take so I can become aware, but that doesn’t work.
  • I have always had a “work head” that I put on when I need to deal with people I don’t know. I sort of prepare for a situation by thinking okay you need to put your work head on and this means I assume my work personality and basically pretend to be confident at talking to people.
  • I’m very passive in friendships. I don’t think to phone people or text them or invite them to do anything. It’s a good job my group of friends arrange things because I never do, it just doesn’t occur to me. So I’ve ended up being included in group things, but no one really asks me to do anything 1 to 1.
  • I remember a college lecture where the tutor asked us to remember a string of numbers without writing them down straight away. We recalled them  and wrote them down a few moments later. The point was meant to be that people only remember so many of them, but I remembered them all. Which is weird because generally my memory is rubbish.
  • At school I always got into trouble for back chatting the teachers, but at the time I didn’t understand why they would ask me a question and I wasn’t allowed to honestly reply.
  • A favourite game as a child was making car parks with my matchbox cars. I’d pick a spot in the garden and line them all up as precisely as I could in a car park arrangement.
  • People have often commented on my flowery language. I often try to avoid using words people might think I’ve found in a thesaurus.
  • I often make jokes that people don’t find funny or even seem to look uncomfortable at.
  • When I am speaking to someone directly I am always assessing eye contact. Look in the eyes for so long, glance away, look at their hands, look at my own gestures. It’s always calculated. Their eyes are like two suns.
  • I firmly believe that I learned how to be a good person from watching Star Trek the next generation.
  • For some weird reason, even if I want to do a thing, as soon as I feel like I have to do it, it becomes the very last thing on Earth I want to do.
  • It often takes a while for the “penny to drop” and I’m often left feeling very silly for not catching on sooner.
  • I feel like I am very good at looking at things from everyone’s perspective. I don’t like to *** about people because I often feel sorry for the object of bitching. In a discussion about people I always tend to explore their possible reasons for their behaviour etc.
  • Everything I think about is complicated. Like, my brain tries to drill down into increasingly complicated parts of a whole. Nothing is simple and nothing is black and white.
  • Husband tells me that I can’t tidy a room properly. Instead I end up super organising one spot like a drawer, then run out of time.
  • My ability to cope with stress is very limited. I often feel like my life is okay as long as nothing unusual happens. As soon as anything out of the ordinary is demanding my attention I start to feel very stressed out and anxious.
  • When sat on the floor playing games with the kids I rock.
  • For some reason I find it incredibly difficult to send cards or gifts. I forget every little part of the task that I need to do and it hangs around in my periphery reminding me of how crap I am until it gets too late to send the card and I end up feeling guilty.
  • When I sneeze I don’t just do like one or two. I do literally ten in a row. I also sneeze at the sun.
  • Ever since I moved out of home at 21 I’ve kept a spreadsheet of our household income and expenditure. I categorise the spend and use that to budget and forecast. I keep receipts and break down by category within each transaction.

oh gosh that is long, I’m sorry! And I’m adding to it all the time!!

  • This is sooo me. My son has a diagnosis but I think I should have too.  The Christmas card bit is me every year. I promised myself that I would write them and have them posted on time this year but guess what I didn't manage it. Actually I do all these things except the spreadsheets(that's just to organised for me). I am interested to hear if you peruse a diagnosis and if it is beneficial.

  • Indeed :) I think we all felt there was something not quite right with us :) 

  • Thanks. I feel like I’m doing the right thing again now. Was feeling so confused after the initial consult with the other place. But when I read posts like this (from the OP) I know it can’t all just be in my head!

  • Well they are certainly the scores you would expect!!

    Hopefully, with holidays out of the way, you'll hear back pretty soon :) 

    I found it frustrating having to wait and then the assessment seemed quite drawn out. But at least I ended up with two diagnosis - not that my wife believes any of them though ..so understanding :( :(

  • Thanks I have taken them and i took my scores to my gp, my aq is 46 and eq is 11. Once i hear back from dr coombs in the new year I’ll make sure i send across all my notes in advance, even if they are not requested! Seems its the only way to get anyone to listen

  • This is the sort of thing you need to present. Add any stories from childhood, teens,school etc (I don't know how old you are). I know you wrote some stuff and they should really have read it. 

    Make sure you email it in advance of any consultation. 

    In my case i wrote 8 pages of A4 in chronological order. Just remember you have to build a case to support your suspicions.

    Like i said the OP makes a lot of good points, so something like that is a start :) As it shows what day to day problems the OP has. 

    Have you done the AQ test online yet?? There is one here.:-

    https://psychology-tools.com/test/autism-spectrum-quotient

    I got a score of 41 and an EQ score of 7

  • Yeah I was hoping to discuss with h&s and go to them for an initial consultation to see if their opinion differed.  My niece was diagnosed this year and she’s in her teens. Can see traits in other family members now too! This is my original post about my consultation https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/17182/private-assessment--first-stage 

    my anxiety is definitely getting worse and I’m now realising why i feel grumpy and stressed everytime I come home from work etc. I need to switch off from the exhaustion of ‘playing a part’ at work. I’m finding my mask is slipping and I’m coming across as rude as I’m so stressed! I’m extremely sensitive to temperature which is a big factor for frustration at work in an office. I can not make small talk nor do I know how to start a conversation and people mistake my silence for ignorance or arrogance and think I hate everyone!

  • I'm with you now :) So you are waiting to see h&s for another consultation and hope that they agree for a full assessment, possibly in January? It will still be a lot, lot quicker than the NHS.

    Do your symptoms etc match up with anything the OP has posted?

    Anxiety is usually a by product of ASC. In my case i couldn't understand why i got anxious for no reason and how it was getting worse as I got older. 

    Do you have any family members whi you suspect have ASC, as the Psychologist is bound to explore this. 

  • Originally went to my gp and didnt ask for an referral but didnt manage to get anywhere with her as i wasnt very good at explaining myself in words!

    So I went for an initial consult with a private company in Southampton called avenue. She suggested i dont need a full assessment. And didnt give me any opportunity to provide notes.

    i went back to my gp and she has referred me through the nhs but they have told me its a 14mth wait.  

    I had also contacted h&s and they have been terrible at communicating, having originally contacted them end of oct I’m still yet to hear from the ASC team, apart from an email from Jo Coombs last tuesday with the same info sheet the admin team had already sent me.

  • I think you are saying you had an initial consultation, but you were told you only had anxiety and therefore h&s don't want Togo through with a full assessment? Because you are unhappy with this, you are trying to contact h&s to say you want another consultant?? Are they likely to change their minds

    One question though, were you referred by a GP or did you go direct and did you provide any supporting notes? 

  • That doesn't sound like a fair assessment. It appears that she didn't know anything about masking/camouflaging from that comment about the appropriate greeting.

    For what it's worth, I didn't have to do any questionnaires for my private assessment (in the north of England). As questionnaires can only be indicative, not diagnostic, then I don't think they are required for a proper assessment though they might be used to decide whether or not to proceed. I suspect that some NHS services use them to buy time and operate gatekeeping procedures as part of their waiting list strategies.

  • Nope, I didnt get any questionnaires! No chance to explain why I was seeking the assessment in any depth at all. She asked if i had developmental delays, what friends i have had throughout life and what schooling ive achieved. Then she concluded it’s just anxiety, i should have cbt and then wrote a report of inaccurate information she had picked up from comments i made. It was literally a chat to decide if a full assesment should be necessary, she had already made up her mind when i arrived and ‘greeted her appropriately’

  • So it looks like she decided not to proceed with the full ASC assessment then??

    I certainly didn't get any written report (which runs into loads of pages( until the final diagnosis feedback session.

    Before the initial consultation I was sent the following questionnaire's (I assume you got the same):-

    (1) AQ Full AAA (The adults Autism Spectrum Quotient (AQ) questionnaire)

    (2) RQ - AAA (Relatives Questionnaire) - I didn't have anyone to ask for this

    (3) AAA Patient Questionnaire. medical educational, family etc

    (4) EQ - 40 - AAA (The Cambridge behavioural scale) - Empathy Test?

    (5) CAT-Q Questionnaire (Camouflaging Autistic traits questionnaire).

    After the initial consultation where she recommended a full assessment, Dr Coombs followed up with an email saying " We've agreed there is a rationale to pursue a full assessment"

  • Sorry i think I’ve misread the report it says not indicated to proceed with full assessment ados2.

    from what you’ve said about your initial consultation thats what i expected mine to look like but she focused on random things and I didnt get a chance to discuss any troubles I experience. I think I will go through her ‘report’ make my own comments and said this back tk her. 

    Perhaps it is best for me to chase h&s and try again, armed with relevant information!

  • The first session was a 2 hour chat, going through some of my notes, why I thought I might be Autistic etc but it wasn't intimidating (although I was quite nervous - stimming like crazy the whole time with my fingers) - This cost £185 - the outcome was that she though it was worth having the assessment.

    The assessment cost £1500.

    The ADOS2 is the behavioural assessment I did with Dr Hughes (Basingstoke) on the 22nd July - this is the weird test when you look at a story and say what is going on, make up a story from some objects, look at a picture and describe it, solve a simple jigsaw puzzle. At the same time I was being asked questions on various subjects eg "why do you think people get married"

  • Thanks, I will follow up with her then. Do you know what method/if any they use for the initial consultation? The previous person I saw claimed to use the ados2 but it was never mentioned until she put her notes into a report- and asked no relevant or probing questions to get the answers necessary to diagnose (I’m yet to complain about that but I will get around to it when i have a better understanding of where i think she went so wrong)

  • As I said she's very nice, but you DO have to chase her, as she only deals with private patients on Mondays and Tuesdays. I was told the whole process would take 4-6 weeks but it > 9weeks in may case.

    So Keep pestering them directly (I assume you have their emails addresses??

    Hopefully, she'll contact you soon for I guess the initial consultation. Her private office is in Swallowfield, Berkshire

    BTW The other psychologist I saw (who was about to go maternity leave) was Dr Hughes based in Worting, Near Basingstoke

  • Thank you thats really helpful! Funnily enough it was Dr Coombs who emailed me Tuesday last week (with the same info sheet I’d already received from 3 other people) and I was told she would call to discuss...which she hasn’t done, nor has she responded to my email so not only am I extremely nervous but now completely lost by their disjointed admin team! 

    I was also told Reading (after thinking it was Southampton) but then also told Basingstoke was possible from january as someone was returning from maternity leave. 

    I dont know whether to pursue them/wait til after xmas&new year or whether to just give up and wait my 14mths on the nhs! I first contacted H&S end of oct.

  • Funny you should say that :) My Psychiatrist (Priory Wellbeing Centre, Southampton) said that he would refer me to someone locally for an assessment, because the normal Psychologists he used were fully booked up (It was supposed to be a fairly urgent case because of my work situation).

    But after not hearing anything for 6 weeks, I contacted the Psychiatrists Secretary, who said that I had been referred to the Hampshire & Surrey Psychology Southampton (Rownhams House)??

    So I went on their website and used the contact form, and explained that they should have received a referral about me. I was very soon (that day in fact) contacted by one of their Psychologists (Dr Coombs - who was really nice BTW) and said that she was able to provide an Adult ASC assessment. However, the appointment with her was near Reading !! (a hour drive there and a hour drive back, from where I live on the South Coast between Portsmouth & Southampton). I had three more sessions with her and another with her colleague based near Basingstoke (for the behavioural assessment).

    It was only at the end of my assessment, did I realise my referral was supposed to be in Southampton!!

    I don't think their administration is very joined up as there appears to be a lot of Psychologists at many locations offering a range of services.

    That said I was never advised of anywhere nearer at the time :( But in the end a few trips over a couple of months is not too bad. For your info here is my timeline..

    Initial GP appointment with all my notes 8th December 2018

    GP referral (after no joy with NHS mental health services) - 7th Feb 2019

    Psychiatrist Consolation - 21st May 

    First contact with H&S P was on the - 2nd July.

    Initial consultation to decide whether I need an assessment was on - 15th July.

    Behavioural assessment  - 22nd July

    Assessment consultation - 13th August (including my wife)

    Email of diagnosis - 15th Sept and the next day..

    Final Session and discussion about diagnosis - 16th Sept.

  • Sorry to jump on Clouds post but i know you mentioned you received your diagnosis through hampshire and Surrey psychology? Did you find their admin team trouble at all? I first contacted them about 6 weeks ago and I’m yet to actually hear from the ASC team. They keep apologising for being rubbish but I’m now completely sceptical about trusting them with my money following my previous disaster with a different private company (mentioned in my original post a few weeks back) I just wondered if you had any trouble with them or if it was plain sailing for you?