Can somebody please help me?

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Hi,

I'm really hoping that some of you here will be able to help me, especially anyone living near London or in the UK. My name is Rose, I'm 23 (going to be 24 this month) and for a while now I've been wondering whether I have an ASD. I've been lurking on these forums for ages, feeling as though I relate in many ways, yet too shy and anxious to post. I have finally plucked up the courage to as I currently find myself in a personal crisis that I am at a loss as to what to do or how to solve it.

I've long suspected that I'm on the spectrum (or have something similar) because of the life-long problems and difficulties that I've had with socialising with others and friendships/relationships, as well other things that seem to be related to ASD. I also recognise the symptoms and traits in my dad, which means that if I have it then I probably inherited it from him. I've taken the online tests and scored highly in each one.

Since my late adolescent years until now I have been wondering why it is that I don't seem to feel connected to anyone whatsoever, unable to relate and generally uninterested in most things other people of my age are. Spending a lot of time wondering how I lose friends so easily and fall out of favour with people, the amount of rejection and ostracization I've faced is hard to take, I have hardly any friends now. Feeling very strongly as though I don't understand other people and what they're thinking and feeling. Always feeling out of place, on the periphery and uncomfortable in my skin in social situations. Being unable to understand why I didn't seem to be able to form close friendships with people and having more like superficial connections with people, which I feel are lacking in meaning. I want to be closer to people and enjoy the social aspect of life more but it doesn't seem possible for me and I really feel like I have tried to understand people to no avail. I find it disheartening to have to keep on trying again and again, with little success.

These issues have caused me to develop both Depression (Dysthymia, technically) and Social Anxiety, which I have been dealing with for at least a few years now. I've tried Anti-depressants, very briefly though as I didn't feel like they were working for me, not to mention the side effects cause me some anxiety. I have tried CBT (on my own and in a group) which I don't feel really helped me to address the reasons that I think the way that I do and I think I was then discharged from their services for failing to attend sessions, as I didn't feel comfortable going. After a couple of people close to me mentioned that they think I have Asperger's, at first I didn't want to think that's what I might have but then as I looked into it and did some research, a number of things seemed to fit. Looking into it gave me one of the rare moments of clarity I've had in my life, like the symptoms resonated with me and I finally had an explanation as to why I was the way I was.

I went to my GP with a list of symptoms and problems that I have, possibly pertaining to ASD and was referred to a Psychiatrist. I talked to the Psychiatrist who had received a letter from my GP with a copy of my symptoms, these being; attention problems, keeping eye contact with people, sensory issues, randomly changing topics whilst talking, intuitively knowing and understanding body language, stimming, repetitive behaviours, obsessions, taking things literally, say inappropriate and embarrassing things, clumsy, trouble with multi-tasking, memory problems, toe walking, monotone voice, can't hold a conversation, trouble with knowing what my emotions are, understanding other people's feelings and lots more. After talking to me for roughly an hour she told me she didn't think that I have it (wish I asked her why she thought this), yet she still thankfully offered to refer me to an ASD Clinic, which I then asked if she would so then she did. Well, I had my 3rd appointment earlier today with a Consultant Clinical Psychologist at a local ASD/ADHD Clinic who has told me yet again that she doesn't think that I have ASD for reasons such as I seem too thoughtful and caring of others to have it (have been described as the opposite a lot), that I seem to learn from my mistakes and lack of evidence of problems common for kids with ASD in my school reports (despite the early behavioural problems I had).

I now only have one appointment left with her before she wants to discharge and refer me to other services, as she doesn't think that I have it. She believes that some of my problems might be caused by trauma and wants to refer me to have CBT, as she thinks I just have mental health issues such as low self esteem and anxiety. CBT didn't work before so I doubt that it would now. I actually cried during the appointment today as I found it pretty upsetting even with all these problems I have and things I've experienced over the years, to be told she doesn't think that I have it and I just have mental health problems. I feel like there's more to it than that though and some of it can't be explained by just that, I'm very lost right now and not at all pleased with what the Psychologist has said. Should I just accept what both the Psychiatrist and Psychologist have said? I can't seem to get the Jobcentre and others to understand that I struggle a lot with interviews as well as finding a job because of my social problems. I had my ESA cancelled last year and was deemed fit to work even though personally I know that I have significant problems that impair my ability to function normally, it's always been like this. I'm approaching my mid-twenties and still haven't had my first job yet! This is despite applying for lots of jobs and having some interviews. Is there anything else it could be if it's not an ASD? I feel like I don't know what to do anymore and I'm back to where I started, figuring it all out again, I am at my wit's end.

Thanks anyone who reads this.

Last edited by VelvetRose on 14 Mar 2016, 10:09 pm, edited 3 times in total.

Hey Rose welcome.

Hi, RoadRatt , thanks and nice to meet you.

From your description it definitely sounds like you are on the spectrum.

I thought so too, I just don't understand how the Psychologist has come to that conclusion, I don't want to sound like I think I know more than a Professional does but I don't exactly believe her reasons for thinking that I don't have it. It doesn't feel right and it's very confusing.

Hi Rose,

Sorry to hear you're having such a rough time. The Psychologists certainty about non-diagnosis does seem rather odd to me - I have been diagnosed, and with symptoms very similar to what you describe. The reasons given for thinking that you are not on the spectrum also seem rather out of place - difficulty with empathy is not the same as lacking compassion, and only certain behaviours are likely to be noticed by school teachers (I was so quiet at school that I doubt many teachers noticed me at all!)

Two things come to mind.

Firstly, maybe the people you have seen are not so familiar with diagnosis for adults. Due to lack of NHS resources, it's not uncommon that former children-only services have simply been 'extended' to include adults - especially since the Government introduced legislation a while ago intended to improve coverage of autism services (with no extra funding for it, as per usual!)

Secondly, they may have little experience of diagnosing women. Because of the different social stereotypes expected of males and females, and the fact that most early autism research concentrated on boys, it is not uncommon for women to display their autistic traits slightly differently than many psychologists are used to - again, especially if they are more used to working with children.

Of course, I cannot say with certainty that any of this is correct - but it may be worth researching this a little bit before your next appointment, and finding out whether the psychologist has any previous experience of diagnosing women on the autism spectrum.

Either way, you are welcome here! The traits you describe are well known to many of us, and I have found that folks who have lived the experience are far more understanding, and offer much better advice, than any of the "white coats" usually do.

hi. welcome. i don't have a formal diagnosis either.

Hi Trogluddite,

Ah, thank you, it's nothing you have to be sorry for though. I just don't think this Psychologist realises what she's doing by not acknowledging how profound and enduring my problems are. I'm very unhappy with how this is turning out, as I felt like I was so close to finally getting someone to listen and give me an answer. I do need to correct one point in my original post though, which is that it's Psychotherapy that the Psychologist wants to refer me to have, not CBT. I'm sorry, for some reason I thought she said CBT, I think the stress from yesterday has impacted my memory. Anyway, I am already having Psychotherapy with a Counselor/Psychotherapist once a week and have been seeing her since July last year. Whilst it has been helpful to see her, I don't think anymore Psychotherapy is the solution to my problems.

I agree, I don't think the reasons that she's given me are sufficient to say that I don't have it. I wonder if perhaps she has mistakenly confused the two, which is probably a common mistake that people make. I feel that even though I've learned to empathize with people a bit more, it's still something that I struggle with. For the most part I was very quiet at school like you were as well, except for my earlier years in Primary school when I wasn't able to behave with the other children properly, so perhaps the Teachers didn't pay much attention to me either as I got older. My parents were in denial about my bad behaviour and didn't get me help for it.

Yes, that could be a possibility, as prior to this ASD/ADHD Clinic opening there was no local services for adults with ASD in my area. So it might be that this new service is just an extension of the children's service and the Psychologist I've been seeing may have more experience with diagnosing children, that would fit in line with what you've said. However, if this is the only local service available and the Psychologist I've been seen by there doesn't think that I have it then she was my only hope. Which is frustrating because I think that the circumstances that I'm in mean that I need a diagnosis but I don't think she thinks I have enough symptoms to require a diagnosis. I can't help but feel that she is making a mistake by trying to link my problems to trauma though.

That is also another good point you make, although she did mention women with ASD that she met and actually said that some women with it are more thoughtful. I would wager from that that she has diagnosed some women with it, though how many women she's met who were suspected to have it and those of which she diagnosed I'm uncertain of. I want to ask her about her experience of diagnosing women but I'm unsure of how to go about this. I have read a lot about how it's usually much harder to diagnose it in women because of the differences in presentation, maybe other women have had difficulty getting diagnosed for similar reasons that I have, more research probably needs to be done on females on the spectrum.

Thank you for welcoming me here, you're very kind and your post has been helpful. You're right, I think that the people on here can offer much more insight and have a far greater understanding than the Professionals have. I feel like I can relate much more to people on the spectrum, whilst the vast majority of people I find confusing and well, stressful.

Hi and thanks, nice to meet you. Do you not feel like you needed to get one? Are you managing to cope okay in life without having a formal diagnosis?

You're welcome.

I take your point about having to accept whatever service is available. From what I've been able to tell from the National Autistic's Society forums, autism teams are extremely patchy and not at all standardised - a classic post-code lottery. I had a similar multiple session evaluation to what you describe, others just a single interview, and one adult who posted recently was even asked to sit in a room and play with children's toys and picture books (maybe that is the best way for some reason, but it did seem a bit odd).

Therapy is also very hit and miss, I've found. I've had anxiety and depression with no obvious triggers for most of my adult life. Before my diagnosis, almost every therapist wanted to pin this on my parents divorce when I was a kid. Insisting that I knew this wasn't right just made them even more certain that I was repressing some horrible dark secret, and they would expect me to reason away traits that I now know to be innate, lifelong components of autism.

Thankfully, I've seen the other side of the coin with the therapist who I saw during my time on the waiting list for evaluation. She took my suspicions of being on the spectrum at face value, and I found that therapy really can work when the therapist adjusts the sessions to take the traits into account. So, whoever you end up seeing, don't stop making your case - some therapists will make adjustments if you are clear what your traits are, regardless of whether you have an overall diagnosis. This was CBT, by the way. I think CBT is much more effective; it deals very much with concrete, practical solutions for everyday problems. Analytical therapies were less effective as autism is just the neurological difference that it is - there's little point analysing it looking for reasons why it is there.

One advice that I have seen is that every NHS patient has a statutory right to a second opinion. I'm not quite sure how you would go about this, or if it would mean seeing a team in a more distant area, but I'd recommend asking on the NAS site, as I'm sure it has come up fairly recently.

Welcome to Wrong Planet!

Hi Rose,
Sorry that you are having such a tough time at the moment. You certainly sound like you are on the spectrum. I would have been upset if I hadn't got a diagnosis, I know how you feel. I was lucky to get it so late in life as there was a real lack of info re my childhood and just one family member to ask (who would have helped). Sometimes professionals get it wrong, so the suggestion from Trogluddite re a second opinion is worth a go. Whatever they decide, you know yourself best of all and WP and its people don't seem to care about formal diagnosis or the lack of it, so WP may become a real support for you.
I don't think I can give you any practical help but you have my best wishes, good luck!

That is unfortunate and means bad luck for the rest of us who don't get our problems properly addressed because of the less adequate Diagnostic assessments some of the Clinicians use, which miss the true cause of the problem and give the person being assessed an inaccurate result. I think that there should be standardized testing for Autism put in place, as I think if different places which carry out assessments are using varying tests for Assessment then that is neither very professional nor reliable. I do find it odd that his assessment seemed more like it was suited for a child as well, I hope that he was given a proper test and questionnaires to fill out to get some information about his experiences as an adult with the disorder.

That's true, it is and we seem to have that in common as well, though I haven't been adult for that long. Yeah, it's annoying when the person helping you thinks they know why you feel a certain way, when it's clear to you that they aren't right and that it's for an entirely different reason. It sounds like they mistook your reaction of denial to mean that they think you're being dismissive of feelings that you don't want them to know about them, when actually you're just trying to tell them that they're wrong lol. Even if you were hiding a secret, it's up to you whether you would want to share that with them, so they shouldn't be pressing you to say more about it, if that's what they were doing. I suppose some Professionals, as much as they do mean well, you have to cut your losses with and find someone else who understands how the Autistic mind works. I think I've spent much of my life communicating in a straightforward/black and white way that a lot of people seem to interpret in other ways.

I'm glad you were able to see a Therapist since who was more understanding of the way that you think, that must've come as a relief to you. It's good that she listened to you without needing to be convinced by you and that she made adjustments. Are you still seeing her? I may need to do this with my Counselor I'm seeing at the moment, as I think she would agree to it without any issue. Maybe I should consider giving CBT another chance, it might work if I approach with a more positive attitude. I agree and that does make me wonder if that is why I haven't made as much progress as I could've done, as I've been having Psychodynamic therapy, though I wouldn't want to have to stop seeing my Counselor anytime soon.

Yeah, I definitely would like a second opinion, I will post on the NAS site as you've suggested and see what they say. I wouldn't mind traveling some distance to be re-assessed, if they would take more of what I think into account. Thanks again for your help, it's very much appreciated, what with how I've been feeling.

Last edited by VelvetRose on 15 Mar 2016, 5:59 pm, edited 1 time in total.

Keep pushing for a second opinion, training NT's to detect Autism is difficult. Sometimes we need to see a few before we find one who is working properly.
Just keep trying every option for testing, regardless of the outcomes there is a lot of support here.

Hi Looking,

Yeah, it's been awful, each step of the process has been an upheaval and given that you and the others who have replied to my original post seem to think I am on the Spectrum, it makes me feel even more sure that I am. To say that I feel disappointed would be an understatement. I'm pleased for you that you got your Diagnosis though, out of curiosity, were you listened to when you raised your concerns about having Autism to a Professional or were you doubted? Yeah, that must've made it a bit tougher, if you were trying to remember things that you couldn't about your childhood. Yeah, I'm definitely going to take Trogluddite's advice about getting a second opinion because I think I do need one, hopefully if I do it will be with someone who knows loads about ASD. I've been wondering about Social Communication Disorder as well but I wouldn't know who to talk to about that. Yeah, the people here on Wrongplanet including you have made me feel welcome here and like I belong. Thank you for wishing me luck.

Yeah, I do find it ironic how it's NTs we have to rely on to diagnose us who tend to have more of a limited understanding of Autism from just studying it, having first-hand experience of living with it would reveal a lot more. I worry about if I will have to go to my GP to ask for a second opinion because he may be reluctant to let me have one. Thanks, that is true, the people here are great.