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
a victory
I got a referral! Without the help of my useless GP hooray
You do not have to inform the the receptionist of your problem, if you say it urgent they have no choice to fit you in. If they say they need to know what the problems is. just say that you wish only to speak to the doctor about the problem politely and remind them about safeguarding, the Information act and they have no legal requirement to know . You have to make it clear to the receptionist that you do not want the same doctors as you before . If they ask why then tell then tell them that you are not comfortable being treated by this doctor and find it difficult to communicate to them.
Do we go to the same doctors surgery because i have had the same issues with my surgerys head GP and surgery manager and they have done this to me. If they are not acting within your best interests than and it conflicts with their obligation of care it becomes a safeguarding issue which means you can go directly to your local health ombudsman.
Thanks for the advice! I think I will look into getting a referral from somewhere other than my GP surgery since the receptionists won't let you book an appointment unless you tell them what it's for and I have a feeling I'll be intercepted by this doctor every time I try to get an appointment about this now (He's head of the surgery/practice/whatever and is registered as my gp despite me refusing to see him since age 12 so he gets all the info on what I request, he gets letters any time I'm referred for anything apparently which was news to me til this phone call recently)
Seems like the less stressful option anyway, I think I'm having my initial assesment with Mindsmatter on the 4th and my counsellor did mention that it's possible they make the referral so I suppose it won't hurt to ask, I just see most places only say GP referral is all so I assumed it was the only way
Absolutely, I was saying to my boyfriend how I would have been fine if he had said "oh, I don't know of such an assessment but I will look into it!" Or just something along those lines, I think it's so dangerous to have doctors still practicing who think they don't ever have to update their knowledge and won't admit that there might just be things they don't already know about!
It's literally one of the huge things about working in healthcare - you are never meant to stop learning, there are always new studies and treatments and breakthroughs in so many areas, one doctor can't possibly know it all, and they shouldn't act like their knowledge is the be all and end all like this one repeatedly does! It's why I partly wasn't expecting him to be all that knowledgeable about it anyway but I figured that he would at the very least look into what I was asking for instead of just acting like it doesn't exist just because he personally has never heard of it
I am in the same situation as you where my nearest doctors surgery is at capacity and the only doctors surgery available is further away from my current address with no way of accessing it without a car.
No, please dont keep seeing the same General Practitioner from experience i suggest you request another doctor. I now avoid older male doctors because their attitude to towards autism and ADHD is extremely negative and their knowledge is outdated.
You don't necessarily need a general practitioner to make a referral. You can request one through mental health nurse or medically trained social worker can make the referral on your behalf.
Mental Health team can make a referral to get you tested for autism, ADHD and other specific learning disabilities. places like CAMHS for under 25s are one of the organisation of the mental health trust or NHS partnership are responsible for diagnosing autism like i said.
You do not need to make an initial complaint with your doctors surgery to contact your local health ombudsman if the duty of care was breached. In this case a doctor denied you treatment instead of seeking a second opinion with someone who specializes in autism which should of been his first course of action.
Counsellor can directly contact you General practitioner if you give permission and directly discuss you being on the autism spectrum. Once a phone call was recorded or letter the doctor cannot avoid making the referral as their is witnesses and record of concerns being raised.
true
To be honest I think it's probably because a lot of people like to diagnose themselves with stuff like OCD and Aspergers because they think it makes them quirky and interesting, so I think some of them wait for you to push it before they take you seriously. Mine didn't until my breakdown, I'd asked before but they just gave me 'everyone is on the spectrum' excuse, and said there wasn't really anyone they could refer me to. I don't know if that was true at the time but it's certainly not, now. I just hope they have a service in your area too.
From what it sounds like in your case, though, it probably is a case of your Doctor being of a time when they didn't know as much about Autism and therefore less likely to understand it as well as someone who trained more recently. But that's no excuse for him not to do his job, and I definitely think you should push to get the answers you deserve
Yeah I think if it's possible for somebody from an assessment team could contact my gp, even just to say "yes hello this exists by the way" it would help a lot, because it's either that my GP genuinely doesn't know (worrying honestly, what other gaps in medical knowledge has he got that's affecting patients negatively) or he knows it exists and is purposefully blocking me from getting a referral. If I know someone has contacted him to say it exists and here are the options.. then he can't possibly deny me again, surely?
It's been the same with me for this whole journey honestly, just talking to and listening to more and more people and feeling both relieved and angry that all these things I've always hated about myself because they make me abnormal and ostracized could all have an actual explanation other than vaguely being told it's all "anxiety related".
I've never been able to keep a job for very long and education was a bit of a difficult one for me and I'm now unfortunately in a position where I won't ever be able to get the degree I worked so hard to get because I couldn't cope and left, when I tried to go back SFE thoroughly f'ed me over and all at once I was told "actually we made a mistake, you don't have any funding left and now you owe your new uni over £2,000, bye! Good luck finding a job you actually like without any good qualifications! Have fun paying that all off with no job!" And part of me is so angry that my family were that in denial about concerns my school was bringing up that I never was assessed as child, had I been assessed and diagnosed I might have had the support needed to make it through uni and have a degree to get a job that I can actually do and be comfortable in and not have a load of debt (other than student loans) rather than the position I'm in now - no quals, no experience at 25 years old and a cv of short-lived work experience in things I can't stand to do. Literally not even the jobs I can't stand don't want me.
It's beyond depressing to now also have this to battle with on top of it all, my relationship is seriously stressful because they don't understand why I'm struggling with everything and unable to cope or voice my thoughts and feelings very well, despite him working in mental health and with people who have developmental disorders he seems to just not understand any of it when it's coming from me. He definitely doubts that I might be autistic, he is like a lot of my family and thinks it's all just laziness/fear from anxiety that stops me being a functional adult. I just want someone to understand how difficult this all is to me and help me out you know? It seems the people who do understand and really want to help, can't, like my counsellor, my GP is now just refusing to actually speak to her other than in writing where he can potentially ignore it and put it off as long as he likes.
just so u know. My new believe system ( Buddhism ) states that everyone is born good/prefect ,,,,,, most people simply do not see their own perfection / goodness their entire life.
so you are good enough in my eyes and other peoples eyes and hopefully soon in your own eyes which is the main one.
your mum sounds quite a woman. A bit nutty maybe but hey who am i to judge ?
your grandmother does sound like a possible autistic which is interesting
so you are you ,,,
I've just read your original post in full and there are yet more similarities. I also HATE phone calls unless I can plan and predict word for word what will be said. I was dismissed from my job 2 years ago because of my mental health which we now know is ASD and probably not BPD as originally diagnosed. I've tried to get back into employment and end up quitting after 2 days every time because it is just too overwhelming and I have meltdowns. I'm desperate to get back into employment. I do think a diagnosis of ASD is perfectly plausible and possible for you and maybe, like me, it will help you to overcome the stigma of mental health and understand yourself better. Adult assessments are definitely a thing - I am 27 and had mine last week. I can't remember whether it was my CPN or GP that referred me originally. You may be able to contact the assessment team in your area directly and ask their advice (explaining about the GP refusing to refer you) and see whether someone from your mental health team can do the referral.
Formal diagnosis acts as evidence of autism which can effectively entitle you to support such social intervention through social services, financial aid through benefits and local authorities schemes and support to find and maintain employment. Without a formal diagnosis their is not proof or evidence that their is a need.
a formal diagnosis can help to secure support in an education setting or employment setting and in many cases can aid and legal enforce reasonable adjustments.
it can also help you if you end up in a situation where you are in legal custody that measures are taken for the exploring the reason behind the offence.
Hi, I'm trying to catch up with these posts but I'm not very good at maintaining attention. Just a quick note before I continue reading - you sound very similar to me (the shaved hair, the masking, the struggles that come with having a job, the anxiety, researching and obsessing over certain things but quickly moving on) and I was diagnosed with ASD last week.
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 ?
It's definitely possible but I feel like the risks outweight the benefits when it comes to being in contact with her again unfortunately! She put me in indredibly dangerous situations with starange men multiple times when I was younger and once I wasn't so lucky and had a badly traumatic experience that she handled so poorly when I spoke about it that she ended up putting me in danger a second time by threatening the people involved and their families. This is like, one of many huge red flag issues but probably the worst one of them all.
I would suspect my nanna on my dad's side more than my mum honestly, my dad has always insisted she has OCD because of how incredibly huge her meltdowns are if everything isn't completely perfect and how she likes it all to be. Masks like crazy too, suddenly when people outside the family are around she's nowhere near as "odd" or offensive or obsessive about things. Could be OCD still but her constant indirectly insulting and inappropriate comments and inability to really understand another persons thoughts and reactions to things has me thinking otherwise. We clash a LOT because of similarities in lots of these traits, but she definitely has control issues on top of whatever else, so we don't get on well either.
They both have been the main source of my self esteem issues honestly, I'm never good enough in either of their eyes
my mum is autistic and doesnt know. the odds your mum is autistic feels high to me ..... i wud recommend to start meeting her and watch her behaviour ... is she like you ? is she masking big time ?
i'm probably going a bit far here
My parents were quite young when I was born, 16 and 17, she was just not ever prepared to be a mother really. More interested in men and drinking, I witnessed her being abused so much as a child and had to stay in some absolutely disgusting conditions when I was younger and visiting her on weekends. She's really quite narcissistic too, so I've lost hope of having a relationship with her that isn't toxic, it's taken some time and willpower but finally fully no-contact.
Though she isn't popular within her own family so I only ever met my grandparents on her side and the odd aunty and cousin, barely saw them, most I met the once and that it! So even if we were still in contact I'd have no clue about if anyone on her side was autistic really
**Edit; my dad was granted custody when I was 4 but I lived with him and his parents since 6 months old, that gives a good idea of how bad it was with her, as the courts almost always side with the mother
That's so good to know, thank you. Hopefully the old job I'm going back to soon can support me a little better this way than before (hospital cleaning it's not a bad job on night shifts with less people around but wow during the day I've never had a more mentally taxing job that's meant to be one of the simplest!)
why do u not have contact with ur mum ?