What to do with a non diagnosis at 42...

Hi

Well im female and 42 years old with a son recently diagnosed high functioning and I just put myself through assessment, after a year waiting for it through GP, and came out with a report that basically puts my anxieties down to shyness and 'childhood anxiety / trauma' ...

They basically noted that because I had eye contact, good non verbal expression, am social, have emotions, very creative, dont have repetitive behaviour interests, and that I cope, I dont meet the criteria. Althought they noted I scored 64/240 (not sure for what test, but 65 is cut off).

I was shocked at this, after hours of discussions explaining my struggles as a child (basically didnt talk to anyone i wasnt close to, always felt differentm and was called weird at school) and in adulthood, particularly with relationships and socially in groups, hypersensitivity and clumsiness. I was also aware that there were aspects they hardly/never touched on which would have a bearing on a diagnosis. They were looking for typical traits as achild and of course im an expert at mimicing social behaviour and my determination and obsession with subjects im interested in have made me successful in work. But it has also caused me intense anxiety and a period of phobia which I also overcame myself. But just because I "cope" thats not to say im not struggling and the destruction its causing...

I was/am still 99.9% certain of my ASD/Aspergers and there is a clear history of aspergers/bi polar in my family.

I am really quite angry with the NHS for basically ignoring alot of the points I made in over the assessment and I also feel my mother's contribution may have been detrimental rather than helpful to a diagnosis. Her memory is unreliable and our relationship isnt exactly normal, she is quite manipulative and may well be on the spectrum too. I took a risk asking her to be part of it but I had no one else. My father even more unreliable as he has a mental health condition apart from the fact that im estranged from him.

I only saw one psychologist, one other sat in on the ADOS test, which I found excrutiatingly stressful, and I cried at the final report which left me feeling helpless without any diagnosis or even reason/validation for my experiences/traits/feelings.

Anyone else had similar experience? Should I persist with this or is it a waste of time and emotional energy to fight? I emailed the psychologist to say I feel much of what ive said hasnt been taken into account and waiting to hear back.

  • I nearly made the same mistake to a 4 yr old post,was cos someone else replied,and it went to top of list!

  • people are replying to this 5 year old post OMG have they nothing else to do ?

  • Hi,

    I was diagnosed with Asperger's in 2012 at age 31. But in all honesty I could probably have faked my way through to appear 'normal' if forced to. I was raised in a household with a violent alcoholic father & a struggling poor mother, who couldn't handle any more strife. She knew I was different but she didn't want to risk having me around professionals. Quickly finding ways to get rid of them when they did sniff around. She kept me dependent on her & mentally manipulated me to put on an act. She would say you must do this, only problem children do that. Or you'll be taken away if you behave like that. My only contact with those she considered 'problem children' were severely autistic & possibly brain damaged young children. I remember her briefing me, that I must not mention my fathers problems & I must force myself to hold eye contact with professionals. Even though she knew it made me feel extremely distressed & had the effect thereafter of messing me up psychologically.

    This putting on an act behaviour became written into my core. If put in fight or flight mode under extreme stress I forced myself to hold eye contact etc. My brain used it as a forced self preservation tool, putting up with very limited contact, in order to get rid of people for good. My mother believed I was depressed when I lived with her, she had no concept of the damage she had done enforcing this conformity. In fact she would wrongly lay all blame on my issues as arising from my desire for self isolation. When I quit work & moved away from home I was able to get rid of this destructive conformity programming by my mother. My mood improved & I actually got rid of what I feel was a lifelong severe depression. I went out little before, but rarely after, though I felt much better in myself. But this improvement was short lived. As after having a child I was met with negativity & constant harassment from professionals. They could see I wasn't normal but put it down to depression. Ironically at the only point in time that I actually wasn't. But due to years of their personal attacks from then on, my depression slowly returned with vengeance.

    In a way it's good I wasn't assessed as a child or young adult. My forced conformity would've probably condemned me to be deemed normal or with some childhood trauma.

    Maybe you don't have autism or maybe you're just so used to putting on an act you can evade detection at the moment. There are also many conditions that mimic other conditions. You know yourself the best & what's right for you. The person who assessed you may have a handful of qualifications but that still just makes them an educated best guesser.

  • I would  have failed the criteria too.  My main symptoms are limited ability to maintain conversation and taste, texture sensitivity.  I am considered boring by most as my brain gives me little to talk about Although on occasion I can be a talker but most of the time I struggle thinking of something to say, can repeat just to fill silences, talk about boring stuff, and change subject inappropriately hoping to be able to participate and keep some kind of conversation going.  Also, I think in a lot of detail which annoys people.  My short term memory difficulty I am sure contributes even more so as I can't talk about something I read or saw or heard as I remember very little compared to others. I've always wondered is this because information just stops by briefly and then leaves or is the info in my brain but my brain can't find it.  

      Not sure how up to date your testing is as it seems the testing still incorporates the classic male symptoms and can skew the female results.  There are probably many more people on the spectrum that don't have  the required no. of symptoms but still has their lives severely altered but not diagnosed.

    My brother, daughter, and son all have my same symptoms but my brother also had hyperlexia.   My adult children do well professionally but struggle socially. My daughter thinks she has social anxiety disorder but I know this is not true.  It is clear there is a the genetic component . 

    Am so sorry and truly understand your frustration.  Sorry if  I got off subject. I am new to blogs and commenting.