Published on 12, July, 2020
Hi,
this is my first post on here. I Had the ADOS and psychiatric assessment this morning and was told that I have ASD/Aspergers, which I have suspected for a while.
part of me is frustrated that I wasn’t diagnosed as a child (I’m 37 now) and that I missed all the early intervention stuff.
part of me is relieved as it explains so much of how my life has been and the difficulties I have had. I guess now I know for definite what the issue is I can try to manage symptoms. I’ve been working through a social skills book the last few months which has helped so much. I really wish that I’d had that book 30 years ago, a step by step guide to social interaction, it would’ve saved me a lot of rejection.
mainly I’m feeling numb and not sure how I should feel.
Anyone else freshly diagnosed or awaiting diagnosis out there?
I'm 38 and have only recently stumbled upon the fact that I'm an aspie through happenstance. I am also undiagnosed. I'm finding a huge sense of satisfaction in the fact that other people have shared similar experiences. I also find myself wishing I had realized sooner in life.
Years of masking masquerading as normal with private meltdowns led to years of burnout masquerading as depression. So much of the utter confusion growing up makes sense in retrospect and I hope this better understanding of myself helps me going forward.
What does the process of acquiring a diagnosis consist of?
Is your diagnosis something you've decided to share with friends and family?
Hi, How did you realise that you are an Aspie? Good old hindsight eh? We can look back now and see the issue was that we were going through life 'blindly' (mind blind that is) and suddenly it all makes perfect sense! Sorry to hear that you have suffered depression. I have too, sadly I think this is the case for many people with undiagnosed Aspergers, a side effect of struggling to fit into a world that we don't understand I guess.
For myself the process of getting a diagnosis started with going to my GP and asking to be referred for an assessment for Aspergers. He didn't make it easy. Initially he asked why I thought that I had Aspergers so I said because I suffer from... and reeled off the diagnostic criteria for Aspergers. The GP then says ' I hear what you're saying but I still don't understand why you think that you have Aspergers' cue a lot of internal eye rolling on my part. I then mentioned that someone I know who is an occupational therapist who specialises in developmental disorders, thinks that I have Aspergers and that a long term friend who is a teaching assistant for children with developmental disorders also has always thought that I have Aspergers and he then agreed to refer me to the local mental team for further assessment. The point to my rambling is that sometimes you really need to argue your case. Maybe take someone with you to support you or failing that quote the NICE guidelines on the responsibility of healthcare providers to ensure a clear diagnostic route for adults. I believe that there is a link to that on this website.
Next step was an assessment by the local mental health team who went through symptoms present and historical and eventually decided to put me through because my social skills were clearly so deficient. That is they referred me to a specialist Adult Autism Spectrum Disorder Assessment team.
Last stage was yesterday morning with said specialist assessment team. I initially did the ADOS module 4 with an assessor. Its really worth researching this a bit first. The tasks they give you are not a test. The tasks are set to structure the assessment and to get you to engage with the assessor. What they're looking for is difficulties in social communication; abnormal eye contact; repetitive or restricted patterns of behaviour etc during the course of the assessment. They also ask about past and present difficulties. This bit lasted about an hour. I then had a 20 minute break before the psychiatric assessment which lasted about 2 hours! (I was exhausted by the end of yesterday!). The Psychiatrist told me at the beginning of the psychiatric assessment that I scored over the cut off mark on the ADOS and thus she believed that I have Autism. But she then did a thorough neurological and psychiatric assessment past and present. I should get the full report in a couple of weeks.
Are you thinking of seeking a diagnosis?
I've shared my diagnosis with family and a couple of long term friends but I don't yet feel comfortable to share it with newer friends for fear of judgement. I've had varied responses. My eldest daughter (age 20) 'oh well it's nothing really'; my husband 'can it be treated?' (more internal eye rolling on my part); my sister-in-law is just being amazingly supportive; one of my friends didn't say too much but said 'oh well they do say we're all on the spectrum somewhere', probably an attempt to reassure me or something.
Have you been able to share the realisation that you have Aspergers with anyone?