my ASD diagnosis has ruined my life

I can relate to this alot. As I'm on the last apt of my autism diagnosis--I've found I've gone through a rollercoaster of different feelings. Almost like you would with someone dying. I think bc alot of the diagnosis has you "under a microscope" like something to be studied. So you study yourself--in a way, hyperfocusing where you didn't so much before. You weren't "autistic," you were just, "YOU." Know that there are others just like you--going through similar feelings. Thank you for sharing & being open about it. Remember, it's a difference in perceiving, thinking, learning & relating. We are in a sense, a minority/subculture of autistics. Keep talking here & you'll see similar things in others. You're not alone.

Hello, I appreciated your point of view. I find myself in a situation where an ASD assessment is more or less being forced on me. Psychologist from mental health team thinks I have autism apparently.  It had never ever crossed my mind that I might gave autism.  I don't have any classic symptoms,  had childhood friends,  make believe play, no obsessions, no collection of specific things, no number fixations, met all milestones,  usually early, made eye contact,  could converse appropriately,  behave in accordance with polite rules of society,  take turns etc.

But I do have social difficulties,  in that I don't go out, I find the idea to intimidating.  If I am with friends I can go with or out to dinner, but the idea of going somewhere alone is terrifying.  I usually wait for other people to start conversation with me, sometimes struggle to carry on a conversation,  and yet have no issues with this amongst work colleagues.  

I agreed to go with an assessment,  still waiting, because I gave struggled so long with depression and anxiety with nothing seeming to improve.  Medication doesn't seemto work, failed at mindfulness,  can't stay relaxed to do it. Struggle so much with suicidal thoughts, and this assessment might indicate which route of therapy might be helpful apparently.  

I'm nervous about it all, worried. I read a few books of adult women getting diagnosed, and in reading their stories,  I find myself thinking I do similar,  or have similar experiences,  but I am a little confused whether I am thinking like this because ASD has been suggested.  Worry is that I might create a self fulfilling prophecy,  when there may be no need. So many people mention diagnosis being helpful, where I was unsure. I'm still not entirely certain about it, reading your experiences made it helpful to know that perhaps my reservations are not unfounded. 

ack it posted before I finished.  My mom has the lack of sensory you were speaking of.  I hate hugs because she's brutal in her touch.  Always too hard.  3year old post,but if you see this I hope it helps that you're not the only one.  We hug her, not the other way now, so it was an easy fix.

Hi.  My mother sounds exactly like you!   We are both autistic, but she also has adhd .  She's very outgoing and loud and exhausting.  She doesn't notice others are upset about her behavior.  She also ruminates on the bad (see therapist for this part, they can fix that) so often that she drove herself sick.  She is upfront and honest and always up for an outing.  I'm proud to have as a mother as she lives every minute to the extreme.  Shed tell you to stop caring about others opinions of you.  They aren't living your life.  She came to this conclusion loudly when I was 8.

Autistic people are human.  Seek a counselor and get help for the loops, nt people get that too. Its totally fixable.  

I'd also like to say that while I despise the sound of crinkle plastic, I love raves and dance clubs.  I have friends who accept me and who don't mind me popping in and out of their lives. I participate in activities and task oriented gatherings.    my life has had road blocks, but its mine.  

Ask a counselor to help with the ruminating. 

Hey..none of that talk of dieing.! 

Have you found a counselor. You can self refer through you doctors where we are.

You sounds as if you are stuck in shock.

The Samaritans are always there.

Don't let s list of statements ruin you.

You're obviously very intelligent and articulate and capable.

No one's normal anf you can get through this blip..because that's all it is. It's a steep learning curve.

I bet you are exhausted as obsessional thinking is a job in itself. Have you seen some of the great help you can get by looking on YouTube on over thinking..obsessing and boundaries.

Do you exercise to get yourself out of your head and away from over thinking ? Maybe borrow a dog if you don't have one?

You can do this you know. There's some help out there if you go digging for it. It won't come to you.

Look after yourself and if someone doesn't like you or walks out of your life..so what. That's there choice and they can be replaced with new people that want the best for you.x

I found my ASD diagnostic report quite painful to read. it is of course based upon a narrow assessment of specific, deficit-focused criteria. In order for me to 'qualify' as autistic certain 'failures' in my communication skills and social interaction have to be clearly identified by the psychologist.

I feel better when I remind myself that the purpose of the report is to confirm my diagnosis rather than describe me as a whole person. You don't have to accept this assessment of you - it's plain from your post that the diagnosis is not clear-cut.

These labels are just social constructions in any case - you are still the same person you were before being diagnosed. I felt self conscious to begin with but I am beginning to relax now. Connections with other people are getting better too. It's less than 3 months since my diagnosis and I've been told it takes a while for things to settle down.

Do hope you manage to get some follow up support - it can be really helpful. Worth checking to see what is on offer locally - I did some Google searches and found a support group in a nearby town that has helped me a lot.

When you meet the right people at the right time you won't find it exhausting, and you won't feel like a burden. Try and hold on to the confidence you had in yourself before being diagnosed. 

Hi 808,

If you decide to contact the Autism Helpline team please be assured that this is a confidential service.  It is possible that the Helpline adviser may signpost you to other NAS services, and of course it is then your decision whether to contact them or not.  There is more information here regarding the Helpline  confidentiality: 

https://www.autism.org.uk/services/helplines/main/info.aspx

I hope that reassures you and that you feel more comfortable about getting in touch.

Regards,

Kerri-Mod

Hi, is there another version of the the page at the first link? I am getting a 404. 

I am a bit hesitant to contact the NAS because I don't want to end up being passed on to either my ex or his friends at the organisation. Is there any way to circumvent this? I'm guessing not. 

I get that that's how you feel at the moment and in truth I have felt similar in recent times. I'm also dual diagnosis, I had an ABI nearly 12 years ago and then got diagnosed with Aspergers at the end of last year. I had a really bad 'wobble' after reading my assessment report, because it does hurt, and I felt somewhat downhearted that I'd finally found my tribe but maybe people with ASD won't accept me because now I have brain injury stuff too on top of Aspergers. It renewed my grieving for what I lost in the brain injury and it made me feel like a proper freak with little more than mashed potato between my ears. I also have to mask a little bit around other people with ASD as prior to the ABI I really struggled to make eye contact but following the ABI I've swung the other way and I end up staring people out (not intentionally), but if I'm with people who have ASD I consciously revert back to bad eye contact, as I remember how uncomfortable eye contact used to make me feel so I wouldn't want to cause someone else to feel that uncomfortable. It's not masking as such I guess, more just good manners and thinking of how my actions could impact on other people.

I'm pretty sure that ASD and ADHD is a reasonably common dual diagnosis, in as much as someone with ASD is more likely to also have ADHD as compared to the general population. So there's probably a few other people using this forum with the same dual diagnosis. Hopefully you can find each other on here. The rest of us can support you too, regardless of you also having ADHD. 

Hi 808, I only read half of your post (sorry, please allow me to prematurely chip in). I was diagnosed last September, and I totally identify with the feelings you describe. The exception being that I'm textbook Asperger's in many ways. Anyway, I experienced a massive crisis of confidence as the diagnosis sunk in, and I started to objective my personality, deconstructing myself and all of my eccentricities, turning them into 'traits' or 'symptoms'. 

I've been going to a late diagnosis discussion group at my local one stop shop and have started to realise that many people feel this way after diagnosis. I think it's fair to say that many with a late diagnosis go through a phase insecurity of self-obsession. Now, I'm trying to focus on the the similarities between myself and other (non-autistic) people. Remember this - a diagnosis is just a label to get you particular support if needed - it doesn't have to be anymore than that. It doesn't define you.

I wasn't diagnosed until age 55 & always thought I couldn't be on the Spectrum because I had adapted to social situations well enough that people just used to think I was a bit eccentric.

I don't make casual eye contact either, not unless I am sexually attracted to someone, because for me it is very personal. I have been told that when I do choose to make social eye contact it can be very 'piercing' though, which is a good trick if you are trying to get served in a busy pub. The obvious aversion to eye contact was one of the things pointed out in my assessment, although she also mentioned that she could tell I had learned to occasionally fake eye contact because other people seem to expect it.

I agree that concepts like 'Aspie Pride' are a bit over the top, but the underlying idea is valid, i.e. just because you are different doesn't mean you aren't as good as everyone else. Allegedly the gay community hijacked the word 'gay' for two reasons, firstly because it meant 'happy' & secondly because it was an acronym for the phrase 'Good As You'. I suppose what I am saying is that it isn't so much about feeling 'Pride' as definitely not feeling 'Shame' either!

Society puts far too much pressure on people to conform. Quite a lot of the traits highlighted in 'Autism Diagnostics' are only monitoring differences from NTs & there is nothing wrong with being different. If I don't like making eye contact, what is wrong with that? In the West failing to make eye contact is seen as abnormal, but in many Eastern cultures, casual eye contact  is seen as disrespectful.

The same is also true of shaking hands, which some people on the Spectrum also dislike. There are ridiculously complicated social rules for hand shaking depending on what country you are in ( http://mentalfloss.com/article/54063/what-proper-handshake-etiquette-around-world ).

Before I was diagnosed, I used to think that everyone one else was a bit weird & behaved far too erratically. Now I understand that in most situations, it's probably me that is the odd one out, but I still think they are far too irrational & that my behaviour isn't wrong just because it is different.

I don't mind telling people that seem reasonable about my diagnosis, it usually takes them completely by surprise & initially they act like I just owned up to being a russian spy, but they quickly recover & it makes life easier as they aren't always asking themselves why I appear to be a bit different.

I know that it is easier said than done, but all I can suggest is that you try to relax & stop obsessing about your eccentricities, then start noticing how weird allegedly normal people are instead. Once you realise that NTs are actually far more irrational, it's really quite liberating.

So what if you aren't exactly like everyone else, try to avoid shallow intolerant people & look for those who will appreciate your unique perspective on life instead  .

Hi 808,

I am so sorry to hear how difficult things are for you at the moment, I know there have been lots of personal responses from the community but I'm also putting links below to the NAS website pages on post diagnosis and social skills, just incase you haven't seen them before:

http://www.autism.org.uk/about/diagnosis/whats-next-information-campaign.aspx

https://www.autism.org.uk/about/communication/social-isolation.aspx 

You may also like to contact our Autism Helpline team. They can provide you with information and advice. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.

Wishing you all the best,

Heather - Mod 

'There’s no need to worry that people with ASD won’t tolerate you because of your ADHD' - except that a lot of people literally can't unless I mask harder than I do around NTs. Left to my own devices I talk *so* much and I am *so* bad at modulating my volume, I can't stand to be in dim rooms, I bounce around from person to person monologuing about my interests. I know we are all unique but I am like a sensory black hole that sucks everything into it (except touch, lol) and it makes me hard to be around. I feel like NTs think I'm weird, but most autistic folk are exhausted by me. I feel like I can't win. 

I know the things about me in my report are accurate, and that's what hurts. I assume that's why I don't have friends. But I still can't pick up on them in time to correct them. 

Hi there, sorry to hear that you’re struggling with your diagnosis. With regards to your ADOS score, I guess that we all present differently. There’s no need to worry that people with ASD won’t tolerate you because of your ADHD, we’re all unique as individuals and we all have our own different quirks and personalities.

I also found reading the assessment report excruciating, fir the same reasons that you mentioned. It’s very difficult to read such things written about oneself. I guess though, it is an assessment for ASD so those are precisely the things that they would pick up on and write about in a report. 

You don’t need to feel guilt. You’re not an affliction. I’m just concerned that you seem to be feeling in a pickle at the moment. Please make use of this forum, we all support each other on here

I don’t feel any pride either. I’m trying not to feel shame but deep in my mind I keep thinking that I’m some second class human being. I’m angry and disappointed in myself. I find it really hard to accept myself.

I was in therapy for anxiety/depression when ASD was first suggested to me. 

I always thought that I’m smart and just anxious. But social anxiety didn’t fit me because I didn’t worry about what other people’s thoughts. I just didn’t think about that. 

And I was sure that my behaviour was completely normal and that other people were the problem, not me. Other people and their bizarre behaviour.

But now I know I’m the problem. My behaviour. That I’m to blame. And that it’ll always be my fault. I became very self conscious and insecure. I don’t think I’m that smart either. I don’t think I’ve got any special talent. Nothing unique, no strengths, just weaknesses. I see only my limitations.

And that’s depressing.

And I don’t feel connected to other people on the spectrum either. No “finally finding my tribe” for me.

I appreciate this, thank you. I never had that eureka moment, mainly because I thought my social interaction was completely ordinary until I was handed my diagnostic report, but also because although I technically fit the criteria for sensory differences mine are so far at the other end of the spectrum that I find nothing at all to relate to in most other autistic people's experiences of it. 

Even though I grieve my ADHD diagnosis sometimes (and I think in my field as a lecturer it's probably more stigmatised as a label than ASD is - I am certainly more scared of people finding out out I have it) I am such a textbook example of ADHD, and am so aware of my own executive dysfunction/inattentiveness, that knowing I have a community and an explanation into which I fit perfectly is a significant comfort. On the other hand, I can see I fit the ASD criteria on paper but I feel like a misfit among misfits in reality. I feel like all I got was the grief, and none of the relief.

I really just want a practical solution to this, to improving socially and being less difficult and being more well liked, or, i guess, figuring out if there's something other than ASD going on that's actually treatable. But I know there probably isn't, either a solution or another diagnosis.

Hi 808, just to let you know I've read your words and feel some of your pain coming through them - I hope that helps a bit.

One thing I can relate to is the trauma of diagnosis, whether it's official or self-diagnosis, and it is a well-established thing that any change, even a positive one, provokes something akin to a grief reaction.

I am currently self-diagnosed, hope to be confirmed in a couple of months. That "hope to" comes about simply because that diagnosis explains so much about the way I am.

But I know that when the penny dropped and I embarked on the cycle of analysis, introspection, clarity, doubt etc that as well as a "Eureka!" moment I also experienced so much grief for the person I thought I was, whom I now know I will never be, plus grief for the way things could have been if I had known sooner (I could have reduced stress and pain, and allowed myself more joy).

I know the "I don't want to be special & unique". I hear you.

I understand some of the impetus behind the neurodiversity celebrations; some of it is about fighting the norms that cast anyone different as disabled and some of it is about celebrating strengths, but I understand where you're coming from.

Hope that helps a bit.