Published on 12, July, 2020
Hellooo I'm sorry if this is the wrong way to post here, like if I'm meant to do an introductory post first before coming here but as I was typing it out all the things I wanted to speak about and ask in here were all pouring out so I figured I may as well just post here if that's okay!
Edit; so sorry that this is so long! I get carried away wanting to get enough detail in for it to all make sense
So, for a number of years I've been pondering why I was becoming a lot more drawn to and felt able to be a lot more open with my friends with autism and ADD/ADHD, and why a few of these friends outright ask if I was autistic or had been diagnosed with ADD, the friends who asked don't even know each other, so I thought it could be a big coincidence or maybe something I should look into, it's been a few years since the last person asked so I brought it up in a GP appointment, and asked how one would be assessed for ADD. Her response was just that she had "seen plenty of children with ADHD and they don't settle like you are settled so you don't need to worry about that"... Right, thanks, I'm an adult not a child for starters and I asked about ADD not ADHD, but okay. Life went on.
Fast forward to last year to now, I've been struggling more than every with what I've always assumed and been told were anxiety related issues, but it didn't make sense, how could anxiety make me want to rip all my hair out because it feels greasy and touched my face? How could anxiety make me break down and cry because my clothes all feel coarse and horrible and make touching velvet make me want to puke? How could anxiety give me such restricting food aversions my entire childhood and teen years, based on textures making me feel incredibly uncomfortable and, again, sick? It could certainly explain some of my social issues, sure, but it never did explain why I still had trouble with people that I don't even feel anxious around. So I looked into ADD again, and came across some youtube channels that spoke about autism in women and the similarities and differences in autism in men and women, and spoke about their own experiences and how they came to realise they could be autistic (so far I have only seen women speaking about this who were diagnosed in adulthood) and I have been bawling my eyes out at every tiny revelation. It was like they described my whole life struggle, everything I've ever had no explanation for suddenly had a possible one, so I'm fairly sure that I'm autistic, I told my counsellor and she agreed to be an advocate for me during a GP appointment to ask about getting assessed and helped me to get some things written down ready to present as "evidence" all seemed well and hopeful and I feel like if anyone here is still reading at this point you might guess what's coming next
Covid means my GP isn't currently doing in-person appointments so my counsellor got in touch with the surgery to ask about setting up a 3 way call or zoom conference (her own GP does zoom conferences with people who need someone else in their appointments) and it was all just a bit confusing from there, she calls them for me because I just cannot do phone calls a lot of the time if its me calling them, but they need permission from me which is fine, the receptionist calls and says I'll need to wait for a doctor to call and I have to ask them (alone) for what I want to do in this appointment because they're confused for some reason about what my counsellor was asking. Issue here is my whole need for her to be there is because there's only one doctor at this place who doesn't try and talk me down and tell me there's nothing wrong unless it's a physical issue I'm in for, and I stammer really really badly trying to explain things so she was going to be there to help me keep on track and give prompts if I got overwhelmed, and politely ask doctors not to interrupt me (they always do). So I waited for this call hoping it would just be a case of "Hello yes I'd like _____ to be in my appointment with me, when is a suitable time for this", confirming details for security etc but nope
Gp calls and is really pressing me for what the appointment is for and I keep telling him I'd like to wait til my counsellor is present to discuss details but he's just repeating that if it's mental health suppoort I want, there's no need for an appointment and he would forward me onto the MH team, but I keep telling him no, that's not what I need but I need her there before I explain in detail. Not budging, fine I guess from his perspective it's an odd situation and if normal appointments were allowed it would be a lot more straightforward she would just come in with me and that would be that, so I tell him I'm seeking assessment for ASD. What a big mistake on my part thinking he would let it go and just book the appointment with us, he tells me that an adult assessment doesn't exist, I tell him my counsellor found somewhere who does it right here in our county, "hmmmm, no, I think probably not". He insists that I cannot possibly be autistic, he or one of the other GPs at the practice would have picked up on it in childhood, "it's a developmental disorder not a mental health problem so I'm not sure why your counsellor has this idea in her head" (I know it's developmental, I just think everyone has overlooked it in me and possibly I've masked my way to this point in my life). He also insists that "autism is only really an issue in education and since you're an adult out of education now, you won't be struggling with it even if you were autistic"...A quick side note, this particular doctor is the one doctor I've refused to see since I was 12 after he berated me for not maintaining eye contact with him during the appointment... I can't believe the irony of him insisting he knows for certain it's not a possibility after that being the last contact I ever had with him til this phone call
So I guess I'm quite stuck. This GP is the only one I'm in the catchment area of as far as I can see, I can always complain but I'm not sure what good it would do in terms of me being able to get an assessment. My counsellor says that he isn't allowed to refuse, and that it's likely he will make getting an appointment with an advocate difficult because he couldn't possibly be this unprofessional in front of another professional. Other doctors aren't great there for anything that isn't a physical ailment and even then they're questionable (my gallbladder became dangerously infected and had to be removed due to them ignoring the pains I went in for multiple times saying it's just indigestion) his wife at the practice is the doctor I mentioned earlier who dismissed my question about ADD, it's generally just really old fashioned and the doctors don't ever seem to want to deal with anything that can't be solved with a prescription.
I was really hopeful to potentially have an answer to all these things I've had such huge struggles with in my life and I'm not sure how to pursue it now, I currently have no job partly due to these issues, I left college twice because of them before eventually completing a course, then the same thing happened with uni because I just am so easily overwhelmed I can't seem to cope with anything, I left my job this year because of it all, and obviously am having the worst time trying to find another, knowing full-well that when I get one I won't cope well with that either because it'll involve either people or telephones. Animal related jobs want quals I don't have and can no longer get, I haven't got the skills for much work that can be done at home so I'm just desperate to at least have an answer to why I struggle so much so that I can work toward fixing it or at the very least know what I need to ask of employers to help me feel comfortable enough in a job to do it well. All this has made me beyond depressed this year and of course covid restrictions won't be helping that but it's largely down to the fact that I feel completely useless and my life reflects it, at least when I was younger I could still live with these issues but now I can't pay the bills because of them, I am just so desperate for an answer, or in this case just where to get answer
accept your GPs solution to refer u to the MH team and press them for a autism assessment. keep things moving and keep insisting on an Autism asessment
dont want to be rude but can u name some autistic traits u have ? just some major ones
where any other members of your family autistic or similar ?
does you're counsellor think you are austitic ?
bear in mind at all times especially in the world of employment you can self declare yourself as being autistic.
But doing so in the selection processes is likely to end in you being bypassed ( sorry to say )
being diagnosed with autism isnt going to improve your job prospects but would help you understand your issues ( if thats what the issue is )
What are the benefits of being formally diagnosed? My GP sent me for a diagnosis and we went through the preliminary stuff but in the end I decided not to become formally proven as having Aspergers because I thought it could do more harm than good ?
Hi, sorry for the late response it seems my email notifications were ending up in the junk folder
Major ones I've noticed are extreme aversion to lots of foods all through childhood, adults always assumed it was a flavour issue and I was just fussy despite me always saying it was a texture issue (I guess a kid saying "it feels weird in my mouth and makes me feel sick" doesn't translate as well). I've worked on this by getting good at cooking and learning how to make all the textures ones that I like, but there is still a lot of foods that I cannot stand to even touch never mind eat.
Sensory again, there's so many types of fabrics and materials that make me feel all kinds of weird to touch, some bad enough to make me feel a bit ill. Stuff being too dry stresses me out to no end, greasy feelings, too.. greasy food makes me incredibly uncomfortable, having hair that touched my face has been a no-no since I was allowed to choose my own haircuts because if it's even a little bit greasy I can't bear it on my face, so I've always had shaved sides, I had dreads for a while because they were easier to keep off my face, most recently I have just had a fully shaved head, which is partly because its easier to keep off my face and neck, partly easier to wash, and also because the long hair i was trying to grow out before was falling out from me overwashing, having it tied up tight to try and avoid feeling ill with it. Odd things too that I never considered might be related to all this before hearing others talk about it like, not being able to stand having different pressures on shoes with laces or odd socks because the textures and thicknesses are different, stuff like that
Social issues, I've had to adjust to actively making sure I'm looking people in the eye and doing the "right" facial expressions after years of people pointing it out as weird and uncomfortable, I quite often will say things that seem appropriate in my head but once out I realise probably not based on people's reactions, this is what initially caused all the anxiety I think, because I was always getting crappy reactions from seemingly normal (to me) exchanges and it just made me way too anxious that even simple sentences would offend people or make them uncomfortable without me realising til it was already too late
Special interests, I can spend a good chunk of time doing nothing but one thing, looking into that thing and researching that one thing etc, basically getting obsessed, one day it'll be of no interest at all and it's dropped for the next thing
I feel like I mask really heavily, and it's made living with anybody really difficult, because I can't do anything productive if someone is around, this is an issue in any job too, I feel like I'm trying so hard to act normal and not-me that I just can't function at all. This makes all jobs difficult honestly because I can't follow any basic instructions at all it's like they fall out of my brain, and things like speaking and walking and hand eye coordination suddenly become a billion times more difficult to do, executive dysfunction is a huge issue, I've never ever ever been good at organisation, timekeeping, keeping to any schedule, and when I try and subsequently fail I just break down
Think I've gone on a little too long again, sorry! But yeah to answer your other questions, my counsellor does think it's very likely, there's more that I didn't put into the above essay and she seems really surprised that my family or school didn't pick up on this. My school 100% picked up on some of these traits though, I used to be unable to focus around other people and would always do my best work at home, or in detentions/afterschool clubs with less people, and in classes I used to have to fidget a hell of a lot to be able to focus but I was bullied for it so I stopped that, and just accepted that I was dumb. School found the contrast in my work strange, and the fidgeting, the bad socialisation, they were really quickly told defensively by my grandparents that nothing is wrong with me though so that was just dropped.
I mostly want to know if I am autistic so that I can have some kind of explanation for all of this if that is the explanation, I've had no answers for employers who ask why I struggle so badly other than "mm maybe anxiety" because that's all I've been diagnosed with, that's all I can get support for in jobs also despite being offered other support if it was ADD/ADHD/ASD or anything else. There's a possibility that I can go back to college/uni and retrain in something that would be a more suitable job for me if my constant drop outs had an explanation other than stress. I'd have a better chance too at coping if I knew what I had to do to cope in a job, what sorts of support I could ask for and had a more understandable way of explaining it than having to write out whole essays to explain it all
As far as family I don't have any immediate family members who are autistic on my dads side, I couldn't tell you about on my mums side as I'm no-contact with her and her family.
One massive problem with being referred to the mental health team is that they know nothing about autism in my own experience and they attempted and denied me an autism assessment. Several years later it turned out i had autism along with other multiple disabilities and disorders.
You the patient have the ability to seek a second doctor's opinion, they physically can not deny your request to autism assessment if you have any evidence or major concerns. It's not your doctors job to prevent you from getting the right the treatment its his job to sign post you and offer appropriate treatment . Doctors have a duty of care and this doctor sound like he is ignoring his duty and this needs to be reported to local health ombudsman.
Reporting it is critical as this doctor has had know formal training of autism and is preventing and discouraging hundreds of patients of patients who need that diagnosis to get social and financial support.