I'm undiagnosed, and have questions about diagnosis

PS - Dawn, I noticed in another conversation on this forum that you said you were going to be assessed at a special centre for diagnosing adult autistic women (if I understood correctly).  Were you able to specify to your GP that you wanted to be assessed there, or did you refer yourself privately?

Maybe I will mention it to her after the class next week.  I'm worried that she might treat me differently, but I hope that she will be understanding. 
 
I actually already work in one corner of the room (the same spot every week :)  But I want her to know in any case.  I just feel that I often come across as weird and I want to explain why.  

I'm confused at the moment because yesterday I took a few online tests at aspietests.org.  I know online tests are only online tests, but my scores were confusing.  They were higher than average for neurotypicals, but lower than average for people with ASD.  If the tests are accurate, then either it means I am at the very bottom end of the autistic spectrum, or it means I'm a neurotypical who maybe has a different issue e.g. social anxiety that has meant that I haven't developed social skills as much as normal.  One test I took said I was probably neurotypical.  But on another test I took (to do with social masking and camouflaging) I got a high score for masking. I'm guessing that in the official assessment, perhaps they also use numerical scores, and maybe I might score too low to be diagnosed with ASD, in which case I guess I would need to use self-help resources.

I was mostly thinking about space, if you could be to one side, rather than in the middle of the class it might be less anxiety-causing. Perhaps asking your tutor for a quick word after class might be the easiest. I know that many autistics, myself included, find using phones difficult. I think emails may be similarly difficult. We find picking up social cues a challenge, so that the more sensory feedback that's available the better.

Hi Martin, thanks for your reply.  Regarding adjustments, I think it's great that employers and tutors are required to make changes to help autistic people.  With my art class though, I can't think of any changes that could be made, and in any case I wouldn't want them to make any adjustments - I wouldn't want to become more conspicuous or be treated differently to others, as I think I would feel even more anxious.  Do you mean adjustments in terms of the room or the space, or in terms of how they talk to you?

I think I would like to tell my tutor, but I'm not sure the best way.  Email would avoid the awkwardness of telling her in person, but then I wouldn't see how she reacted, and I might then be worrying about it.  (I find online communication difficult because I can't see people's reactions, and I tend to worry about them.  I've come off social media for this reason.  I don't know if this is something that autistic people commonly struggle with, or whether this is more of a neurotypical thing?)  On the other hand, if I told her in person, I might find it difficult to choose the right moment.  I was going to tell her last week, and all day I was wondering when would be the right moment.  I don't know if this is an autistic thing or not, but I often worry about whether it's appropriate or not to bring something up.  I guess maybe in some situations, there's no right answer.

Hi, It is not easy to decide who to disclose to. At the moment I have only told my family and closest friends about my diagnosis. I am contemplating whether or not to make this more widely public. However, if I were still in employment or studying I would certainly inform my employers or tutors. If only because they can then, as they are required to, make accommodations. Pre-diagnosis, this is a more difficult call, but, in my opinion, telling your art tutor would probably be a useful thing to do, especially as you are experiencing anxiety in class. After all, your anxiety is real and not dependent on any clinical diagnosis.

Hi Juniper,

Thanks very much for your reply, I found it interesting to read how you describe social skills.  The way you write about them, I think already do have them, even if not perhaps as much as most people.  Normally when I think of 'social skills' they seem daunting and a mystery to learn and decode, but the way you describe them they seem based on empathy and common sense, which is helpful.

It sounds as though you have gained a lot of understanding and improved your life a lot, which is encouraging to hear.

Hi Dawn,

Thanks very much for your reply.  

I'm interested to know, what sort of therapy are you having from your private counsellor?  Is it CBT or another type of therapy, and is he changing the approach at all to reflect your possible diagnosis?

I was having CBT for low self-esteem and insomnia a few years ago, and I told the therapist that I wondered if I might be autistic.  She said straight away that she could tell that I wasn't.  (This was before I had started looking back over my life and seeing lots of possible evidence, and researching Asperger Syndrome, which I've been doing in the last few years).  It's only recently that I discovered that it's possible to be autistic and appear 'normal' to most people.  My doctor has agreed to refer me for an assessment, anyway.  Recently I contacted an acquaintance whose son has Asperger Syndrome, I told him I thought I might be autistic and asked him what the testing process involves.  I thought he would say I wasn't, but to my surprise he said 'speaking frankly, I always thought you were an Aspie' and he said he had seen signs in me that he has seen in his son.  I asked him if he could make a list of those signs that I could send in to my doctor.  I've known him for a few years but he never said anything earlier.  Perhaps it's better this way, as I might not have accepted it if he'd said something earlier.

Thanks for your comments about how useful the process might be, even if it turns out I'm not autistic.  I'm in the process of writing down all the signs that I've noticed over the years, and I'm going to send the list to my doctor who will hopefully be able to send it to the assessment team.  It's quite a distressing process to write down all the social mistakes I've made over the years, and all the ways that I've felt different, but it is helping me clarify the problem, and if I'm not autistic then I can still show it to whichever therapist I end up working with.

It's good to know that I'm welcome on the forum whatever happens. This seems like a very nice community.  It's surprising (or maybe not surprising) that whatever problems you have, many others have experienced the same thing, even if it feels like you are the odd one out to begin with.

Hi Martin,
Thanks for sharing these specific examples of how autistic and neurotypical people can behave differently in friendships.  It's a bit confusing because in some ways I think my friendship behaviour is neurotypical, but there have been several occasions throughout my life where I haven't picked up on signals and have made big mistakes.  I think it's only going to become clear after I've had the proper assessment whether or not I'm on the spectrum.  I have an acquaintance whose son is autistic, and I remembered him recently when I was researching about autism.  I contacted him and told him I think I might be autistic.  I was expecting him to say he thought I wasn't, but he said 'speaking frankly, I always thought you were an Aspie'.  He told me he had seen signs in me that he's seen in his Aspergers son, so I've asked if he can make a list that I can send to my doctor.

You mentioned telling friends that I'm awaiting assessment.  I'm finding it difficult to decide who I can tell.  The person I see most at the moment is my art tutor, at the painting class I take once a week.  I don't know if I can call her a friend, but we get on very well.  I want to tell her that I think I might be autistic, but I don't know whether or not it's appropriate.  The reason I want to tell her is because I'm often very anxious in the class (I find it difficult to paint in a room with several other people) and, now that I know that the anxiety may be because of autism, I want to tell her so that she understands what's going on.  But I'm worried that telling her might be awkward or that it might be too much information.  It's difficult to judge.  (I often find myself not able to judge whether I should say something or not.)  I think I will wait for a time when it might come up naturally in conversation.  Or maybe I won't say anything unless I actually am diagnosed as autistic.  The trouble is that I won't know for several months.

Hi Aonghas,

Did the team who diagnosed you give you any details of places you could contact for further help?  From reading other people's stories on this forum, it sounds like after a diagnosis you can then get further help.  Maybe somebody else knows more details?

Hi Out_of_step,

Thanks very much for your reply and for describing some of your journey after diagnosis.  It sounds as though the therapy that you've had so far hasn't been specialised for autism, but has helped you to accept yourself and deal with anxiety.  It's good to hear that it has worked well so far.

Thanks for the book and YouTube recommendations.

If you're comfortable talking about this, I'd be interested to know what you mean by it being a processing issue rather than social anxiety?  

Hi ItsMyMind,

Thanks for your reply.  It's encouraging to hear how many positive changes you've been able to make independently and with the help of your coaching.  Thanks for describing it in detail - that has helped me to understand what sort of help follows an Asperger's diagnosis.

I'm interested to know, what do you think it was that initially helped you realise that you might be autistic?  From what you've said, it sounds like you first saw symptoms in your daughter and then recognised them in yourself as well?  Or was there something else that led to the realisation?  Also, only if you're happy to talk about it of course, why do you think it was that you weren't diagnosed earlier in life?  I'm interested in hearing about the experiences of other people who were diagnosed later on.

Social Skills. To me these entail being considerate, open, kind, respectful. They involve allowing others to be themselves without trying to control or use them. They involve identifying who you can allot or invest time with and who can stay an 'acquaintance'. They should involve having good boundaries. All of these things can be learned. I spent years studying perspectives of healthy principles of engagement, learning the difference between boundaries and abuse, learning ethics, creating aesthetic. This doesn't mean I can read your mind and to be fair, telepathy is not a healthy super power. 

Life though, is always learned one element at a time. It's overwhelming at best. Anxiety can be a consequence of mal-adaptation to our environment, feeling trapped or powerless or useless. It can be a consequence of a misfiring neural network, a consequence of not having the right tools or education or just in need of a complete retreat from life. I experience it when I'm over-worked or working into the wee hours of the morning. I've also experienced it from broken relationships, and noticed once I remove myself from the party completely it goes away. I've experienced it from an LED which I needed to change to incandescent or halogen. It can also be from diet: poor nutrition or not being diagnosed from something causing poor nutrition. I found for myself and my son that a multi vitamin daily helped with deficiencies causing anxiety. For him, we discovered he needed more of a boost than I did, so we found a mushroom complex he takes 3 days a week and ashwaganda on the other 3. One day off, just sunshine if it's out. 

Knowing what's causing this kind of stress is important to sort out, as it sounds like you're aware :) Hopefully, then you can start working out everything else one thing at a time. 

Hello Ultramarine :-)

I would say that having ASD is the true cause behind me having made multiple mistakes socially and with my career. Post diagnosis and looking back at my life history I can see how ASD explains so much of why I kept getting things wrong.

I am reticent to give you definite answers on your symptoms as I’m not medical (I’m in NHS management) and I don’t know you - most people on here will be the same and I think diagnosing people via forum discussions would be a red flag for the moderators.

It sounds like you are analysing your behaviour a lot which I did and still do constantly because, for me so little in life was instinctive so I never knew if I was doing something wrong or if I was just over-thinking. I’ve abandoned friends who didn‘t ‘get’ me and who were, I now realise, judging me against neuro-typical ideals. I’ve also ruffled feathers in the workplace because of my straight to the point/blunt approach because I clearly didn’t have an inbuilt social niceties toolbox.

I’ve learned loads from forums and my own research and that helped give me more certainty about the fact that I really did have symptoms.

I knew I had always masked but didn’t use that term because I didn’t know it then. I knew I lived in my head a lot but wasn’t aware that the extent to which I was doing it and the front I had to put on everyday was typical in autistic people. I simply didn’t know that neuro-typical people didn’t have to do all that extra work (it’s exhausting!)

Leading up to my diagnosis, the key thing for me was picking up pathological demand avoidance in my daughter which made me realise I also had this. This led onto other discoveries: masking, sensory processing disorder, autistic meltdowns, autistic burn out, Tourette’s, anxiety, hyper-focussing, poor time-keeping, memory issues, etc. The more I read, the more I found I was able to tick a checklist of symptoms in both my daughter and myself. I am still reading and still learning every day despite what I thought I already knew about myself.

The post-diagnosis CBT in Kent is ASD specific. The Access to Work coaching will help you tackle whatever issues your neuro-diversity causes you in the workplace so for me it will help with my ASD issues plus my (suspected) ADHD issues because I can bring any issues to the table even though I have no official ADHD diagnosis. So when you say:

Ultramarine said:

Can anyone tell me what kind of help you can access, specifically in terms of therapy:  can you get help developing social skills, and help for low self esteem and anxiety, for example?

My coaching won’t teach me social skills but it will help me reflect on my approaches, change the negative thought  patterns, help me see where I can be honest about my issues and give me insight to how my brain works so I can strategise how to be successful in the work place. In turn that helps with my low self esteem and anxieties and helps me function better because I don’t have to pretend to be neuro-typical. It really takes the pressure off. Does that help?

I’m also looking to learn a lot from my daughters ‘ASD and me’ course! As she is learning it at the start of her ASD life rather than in the middle like her Mum. 

The friends I have told about my diagnosis have all been very kind and supportive, one even said that she suspected that she might be autistic herself. I think it depends on the qualities of the people you tell. Not everyone will make allowances, or be understanding.

Hello Ultramarine,

Nice to meet you.  You have a number of questions there:

On the friendship thing, it not a symptom as such but a very common experience - I think some of the others have commented admirably on that and it's happened to me on occasion..

On women, girls, people whose gender identity isn't binary and men who don't fit the stereotyped "male" presentation- yep! I hear so many stories of them being missed.  There's a lot on you tube about women and diagnosis.  As my boss who is a teacher and well aware of this put it: "We often pick up on the boys because they melt down in class, throw chairs across the room and hang out of the window telling the world to effe off.  The girls we often miss because they have their heads down at the back of class either shutting down or getting on with their work only to melt down later at home".  Not only that but all the early research was done on boys with that "male" presentation.  I suspect there are some assessors out there who are still not trained well enough to pick up the other possible presentations or autism when it's covered by masking.  There are some folks on this site who have reported they or their girls, in particular, have been assessed and seem to have been dismissed because they are superficially passing as socially OK for an hour.

This in turn can feed into the issue of misdiagnosis.  MH services often pick up on things like OCD and eating disorders, but fail to spot that autism is behind the development of these problems and why they don't often respond well to therapies for NTs, or else completely misdiagnose and tell people they have personality disorders etc when they don't.  I'm only just beginning to understand I have the chronic phobias I do because of sensory experiences related to probable ASC. And MH services have never picked up on any of the ample clues I now realise I'd been giving them of either autism or some other sensory issue.  I had to work that one out for myself. I certainly believe that if ASC is in the mix it is important to tease apart what is due to ASC and what is an MH issue.

Moreover, there is a growing body of research which says that with ASC MH problems need to be addressed very differently as it can affect which meds should or shouldn't be prescribed and the therapeutic approach in talk therapies because the interactions and communicative and cognitive styles are so different. 

So, I think in your position you are doing a wise thing in going for an assessment.  And yeah, I'd tell any therapist I was working with I was waiting for one.  It could help.  I've had endless problems with NHS services, but have a private counsellor now.  I told him and he's treating "as if" while we await an assessment and that IS helping matters A LOT.

If they don't diagnose you as autistic and you are satisfied they have looked properly under the surface of things, then the process might still prove very helpful.  I think there are a lot of folks out there, - and I might turn out to be one, who knows? - who meet a lot but not all of the criteria for the diagnosis.  We're all on a human spectrum somewhere after all, and it might well be that the traits you DO have are nonetheless causing problems/benefits for you in some respects the same as, or similar to people who do meet all of the criteria.  Again teasing apart which traits you do and don't have might help you understand yourself better and find some strategies which work better for you.  And yes of course you'll be welcome on the forum.

As for the point on support,...I've yet to find out myself what's there for me and what's not.  I guess the others will have some very variable stories.  For me, for now, the best help I'm getting is from my private counsellor, my boss and my dentists, lol.

Perfectly agree with you. It is my daily life. Now I said I Autistic or I show my card. It is a first step, but it is not enough, because deeply nobody change.
Maybe do you have another expériences or solutions or where to find help?

A few possible insights on the friendship thing. Autistic people tend to think that friendships stay in a form of stasis; that if you are not in contact for a time, then when you re-establish contact things will be exactly the same. However, neurotypicals work at maintaining friendships by keeping up contact and feel neglected and sometimes offended when this is not forthcoming. Another aspect is that autistics tend to be poor at picking up social cues, especially facial expressions and body language. This means that we often do not notice that we have offended someone until they are totally exasperated and actually say what the problem is. This also works in reverse, we are poor at giving out these signals, and may offend because we don't sound or appear to be concerned or sympathetic, when we very well might be. If you trust your friends, it might be worth telling them that you are awaiting assessment and point out some of your social limitations, they may be more understanding.

I was diagnosed mid thirties female earlier this year. The diagnosis has helped massively in understanding myself and quite often now I can "let things go" as it's just the way I am. I had my assessment while I was undergoing a course of CBT (separately). I told the therapist at the start I suspected I was AS and it was taken into consideration.  I had group CBT a few years ago which made me worse. Go with a one to one course of treatment and it should be more flexible.  

I'm at the stage where I'm less anxious because strategies learnt in CBT and being more accepting of who I am. Regarding functioning well, I feel this gets worse as I get older and this is something I actually need help with (things I CAN change).

Other than post diagnosis feedback and a very detailed report I haven't had any support. I can reflect and analyse well which helps but need to access some more talking therapies at some point. 

Regarding losing friends this way, I've read many times its common for this to happen although with me I work hard to maintain my friendships; I don't like confrontation so can be quite passive. I've managed to filter out the people in my life I don't like anyway.

I often wondered myself if it was social anxiety.  Now I understand it's more of a processing issue. The difficulties happen even when I'm feeling very comfortable or confident in a social situation. My brain works so quickly to compensate that no one other than me notices. This is probably what masking is. 

I've edited this thread because I realised I hadn't addressed some of the issues you raised.

Good resources: Sarah Hendrickx books / youtube and Yo Samdy Sam on youtube.

Hi ItsMyMind, 

Thanks very much for your reply.  It's really good to hear that the support that you have been getting has been helping you.  

It sounds like the therapy you had was specialised for ASD.  If I am given a positive diagnosis, this is what I hope that I might be able to have.  I want to try to understand why I have particular issues.  I don't know if this is a common symptom of ASD or Asperger's, but in the last few years I have unintentionally offended or fallen out with several people.  It's got to the stage where I'm worried about trying to make new friends or develop my career, in case I wreck things.  Do you know if this is a common symptom?  Maybe it's just me?

I can't imagine how stressful it must be at the moment for NHS workers.  Thank you for taking the time to reply to my post.