Point of Diagnosis

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I'm new to this site. Joined years ago but believe this is my first post.
Long story short; I became aware I have Aspergers a few years back. The local charity agreed diagnosis but the NHS disagreed. I never gave it much thought after that. It was simply another awful NHS experience. I'm now in PND Counselling following my first child. Every time I Google problems I'm having Aspergers appears. I no longer feel able to ignore it. My Mum, Sister and Partner want me to drop it and focus on positive things. They can't understand why I want Aspergers. They all said I was crazy initially then started reeling of similarities I'd missed when they saw a list of traits. I assume their response is normal. I'm basically quite overwhelmed by it all. I'm considering angering them and facing more mockery at my GP by pushing for diagnosis then I consider why. I'm scared, embarrassed and clearly not coping with life just now. From what I read I have all the traits of Aspergers but I received Counselling in my teens for caring about others feelings too much (led to self harm) and I think I'm quite socially adept as I learned to copy my Sister early on, though choose to have very few Friends who I don't contact all that often (spend quite a bit of time worrying about our different perceptions of our Friendship as I imagine to them I treat them like I see them all the time but we won't have spoken for weeks/months). Socially adept is perhaps a bit strong as I avoid going out as I find it exhausting to process of emotionally overwhelming. Any thoughts or words would be greatly appreciated. Would like to know if I'd get some sort of help if diagnosed. Thanks in advance.

Hi, it sounds like you've been through a lot and having a baby certainly disrupts everything and can be very hard to deal with. I have three children and was hospitalised with 'PND' after the birth of each. Officially I had a diagnosis of bipolar but it didn't really fit. Fast forward eight years and I finally made the connection with aspergers, and asked for an NHS specialist team diagnosis appointment. I had that last week and was diagnosed with aspergers. Anyway, I now have three beautiful children and the peace of mind of knowing what causes my issues, and thus having a much clearer path towards coping with them which is better for me, and better for my family.

So my feeling is this, request a second opinion, and find out. Knowing ourselves is the best way to cope, and it seems like without the answers you are struggling to move forward?

It's a shame that your family ask "Why do you want Asperger's" because it's not a question of "wanting it" -- it's a question of how you have noticed that everything seems to fit, hence justifying the pursuit of an evaluation and possible diagnosis to set your mind at rest that you'll know why you are the way you are.

I totally get that. When one is at the stage where one "suspects" all clues point toward the spectrum, it's really not about somehow wanting that so much as knowing that if that could be confirmed or denied, it would answer a lot of questions and help you proceed more sure footedly from there, in dealing with your traits and symptoms.

One entity agreed you may have ASD, while the NHS disagreed --- was this at the level of you family GP telling you you don't need to be investigated, or did you have the full process of an evaluation on the NHS, in which they concluded you are not on the spectrum? Even if it was the whole process, on the NHS I believe you're entitled to seek a second opinion/second evaluation with a different specialist, if you truly believe they overlooked something badly enough to make the wrong decision. I would approach the system again to pursue that.

Also, it may help to research if there are any clinicians who also specialize particularly in women on the spectrum, as even professionals are not always up to date or experienced in dealing with a particular sub-category of presentation, such as adult females -- the system is so geared toward diagnosing children and the "boy-heavy" belief that more males have it than females.

Thanks for the replies folks. Yesterday was a big day for me. I was mindful that I have Aspergers throughout and it made a huge difference. Instead of berating myself all day I took comfort in being normal. I also came face to face with an old Friend who abandoned our Friendship for reasons unknown to me (long story I no longer care to go over and over and over) yesterday. Instead of becoming knotted in emotional turmoil following our exchange of small talk I looked down at my sleeping toddler in her buggy and felt happy thinking of her blissful sleep and all the fun we have to come. It was unbelievably liberating not to over think. For now I've decided not to go down the official diagnosis route. I believe I was previously tested using the questionnaire mentioned in the responses. A few days ago I'd have loved to have seen those questions again but today I see a choice. I could rip that test to shreds analysing it's suitability to determine Aspergers or I could spend that time at the swings laughing my head off with my Daughter. It's an easy choice I can't believe I never knew I had all these years. I'm not sure whether anything that came before Motherhood would have been a strong enough pull to get me to stop overthinking. Again a few days ago I'd have analysed this to death. Now, I'm just super grateful to have found the Aspergers community and have a healthy baby to love and live life to the full with. I hope you guys enjoy the sun today. I'm almost hoping to have my Aspergers challenged today as it was a buzz conquering situations as they arose yesterday x

I'm glad you've found a way to make peace with yourself and your situation. That's certainly a lot easier than worrying and second-guessing yourself all the time. If you ever did decide to pursue an official diagnosis, I can't say for certain how the system in the UK works, but I've received quite a bit of help after getting mine. I now receive individual therapy, attend a social skills group, have access to SSRIs for anxiety, got accommodations for work and school, was able to begin the process of applying for disability assistance (before finding my current job), and I recently joined an assisted employment program that is going to help me find a job I don't hate, and once I get there, they're going to support me until I can do the work comfortably on my own, which will make a massive difference to my anxiety and subsequent productivity. Regardless of what you decide to do in the future, I hope things work out the way you want them to. Good luck!

wow i could really relate to your post. i am in a similar boat in that quite recently i have suspected having aspergers based on reading about the traits in adult women and having an "aha" moment where i was like omg that is me. i have been in treatment for depression, anxieties and ocd and have an appointment next week with my meds nurse and want to talk to her about aspergers and i am very afraid of being shot down about it. it feels very validating to believe i have it, and if that is shot down i don't know where i will go from there.
so far no one is taking me seriously though. i showed a list of the traits to both my husband and my mom. my husband's first response was "oh, so you're trying to diagnose yourself with aspergers now?" and my mom was similarly unsupportive about it. neither one got how it could make a difference in dealing with my problems, only saw it as being hard on myself and unnecessary.
but kudos to you about saying screw it all and enjoying the time with your daughter. i have two young daughters myself and can totally relate. if i am shot down about this i am going to remember what you wrote here and go take my kids to the park and for ice cream or something thank you for that

Thanks for the info. It had been a long time since I'd had a day I wasn't wishing myself dead so it's akin to winning the lottery for me to say I've had a good day. Had another good one today. Managed to mentally resist numerous topics I could have analysed to death. I also managed to socialise without feeling drained yet up to the ninety after it. I've even planned a day of social activities tomorrow and am looking forward to it. Spoke to my Sister today and discussed Aspergers. Had a good laugh discussing things we view differently, was quite an eye opener. I was giving examples of 'normal' things about me and she informed me they weren't. Feel I need to learn more. I'm super curious about what's branded normal as I thought I was. I've had a lot of bad luck in life and figured that's why some find me eccentric and I've been very emotional, suicidal and a bit odd. It's amazing to hear you're receiving all that support. Wow. It's great! I wish you all the best. I'm lucky to have had a very socially skilled big sister and recall analysing her behaviour at an early age and mimicking it. I feel this has greatly helped me from a number of other traits snowballing. Thanked her today. Hope you flourish in this area as I think it's key to a lot. P.S. Hope my responses aren't rude. Could upset myself thinking about this but I simply can't put myself through it so I'm not rereading posts and continually rewriting them. Sorry if I'm upsetting anyone with my replies.

Following the last response I'll elaborate by saying I'm dealing with this the quickest and best way I know. If I go to GP and tell family and friends (3 unconnected people) I'm taking this route it's opening a can of worms I am unable to cope with. It could seriously push me over the edge. What's best for now is dealing with it quietly. When I have a good moment or day, I tell them about it at an appropriate time. I've been unable to answer how my days been for a while without crying so they're simply happy I've something positive to say. I'm not taking any more steps til I think I can mentally handle it. Can I suggest that you try this approach as it sounds like you could do with a well deserved rest. I visualise having a long spell coping and telling my family it's because I've accepted I have Aspergers. I feel it will be easier for them to accept and not feel threatened by. Good luck.

Something I found helpful in the three year interim between when I learned about AS and when I got my diagnosis, was to learn about myself and how the disorder impacted me. From this, I was able to develop little things that helped me get by day to day. For instance, I learned how to recognise when my body and mind were reeling from social and sensory overload, and what I had to do to regulate my system. I learned how to ask others to give me the time and space I needed, and to not feel ashamed or unworthy of my request. I also spent a lot of time studying my sensory system and devising ways of living more comfortably in the world. I bought headphones and started carrying earplugs with me wherever I went. I started collecting various stim toys, and learned by trial and error which ones were effective and which ones weren't. I learned to live more instinctively, to ignore the voice in my head that criticised me for behaving strangely and cared too much about what others thought. If I wanted to stand three inches from the Christmas lights and stare at them while humming because it made my brain light up with excitement, I did it, and I ignored any odd looks people gave me. There are a lot of things you can do to help yourself now, just knowing that you have AS. Even without official services or a documented diagnosis, you can model your life to make things easier for yourself.

Don't know if I'm quote brave enough to embrace my quirks yet but you're spot on. Imagine I'm probably doing a few things others aren't and never noticed. Your example of Christmas lights is surreal to me as I wouldn't find that odd and it's interesting to read others would likely judge that. I spent one Christmas playing with the tree and lights all day!

I used to wear ear plugs daily, can't believe I forgot. Only stopped as they started to hurt my ears. Find it funny that my reluctant Mum and Sister who are against me having Aspergers point out other traits I've missed when we chat. Guess we're all gonna take a while to come to terms with it.

You sound like your making great progress. Looking forward to reading other posts to see what else I can learn. Would normally approach this obsessively and at break neck speed but I'm determined to pace myself.

If the lady with Children is reading I'm very keen to focus on my Daughter. My Niece had an emotional issue at school the other day and my Sister corrected my advice. Apparently others don't need to mind map and take written record of emotions. Really want to ensure I don't negatively influence my Daughter. My one goal for her is that she is emotionally strong and confident but I now realise she may not view the world as I do. I hope she likes me and never sees me have a meltdown. She's only 11 months though so I'm gonna not think about it until my next PND session as it instantly makes me cry. I'd love to hear how her kids are responding to it all, perhaps there's lots on other posts on this topic.

Just because others don't "need" to mind-map or write out emotions, doesn't mean they won't find it helpful or that it's a bad idea. I wouldn't worry too much about giving your daughter "wrong" advice on how to handle her problems; all parents try to teach their kids through the things that help them. Sometimes it works, and sometimes kids are just different from their parents, and that's fine.

Thanks for that perspective, it helps, you're right. My job is to guide her to find what works for her. I've apologised to my Mum for all the worry and tears over the years and am fearful my Daughter may need lean on me emotionally like I have my Mum as I can't even cope with my own emotions. As such I had plans to write a book to help her cope with life which was met with odd looks off the Mother in law and PND Counsellor. The more I speak the more areas I see I need help with which is pushing me to go for an official diagnosis as I may be offered help which would give my Mum, Sister and Man a well deserved break.