I'm in my early 40s and recently had a Autism Assessment which was based around ADOS.
I did everything I could to be 'myself', the self I've been brought up to be embarrassed about, ashamed of, and hide my entire life. i know I did ok, but I was still my social bit. There were 3 people in the room who I didn't know and who were being nice to me. I think I must have just went into autopilot. I also wasn't as prepared as I should have been, I should have had correct checklists, because I know I can't talk about it or explain it unaided.
As you might have guessed, they gave me a negative diagnosis. I scored 3. They didn't observe enough relevant behaviours in the testing.
I've a second follow-up in 7 weeks time to discuss what I will have read int he more detailed report. I now also have checklists ready per Samantha Craft at everydayaspie.wordpress.com and help4aspergers.com
This is after 2 days of feeling completely lost at sea and having a major meltdown this morning.
I don't want to argue with the experts, I always doubt myself. But the bigger part of me knows I'm an Aspie. It's all me, and it all makes sense of me past and present. The me I never seem to be able to fully show anyone that is.
I feel a break in the clouds having had the epiphany of the checklists and finding this forum here. But I really do need help. I need to find a way to have them see who and how I am under all these systems I have in place to get on in, and with, life and the people in it. I'm so exhausted by it all, the weirdo inside that has no explanation. I need her to be validated. I need to be free. I thought I'd finally be able to breathe out and relax once and for all once this assessment was done.
Please can anyone help me figure out what to do?
Any help very, very gratefully received.
Difficult. So you've learned to mask so well that all people see is your neurotypical communication, and you've never learned to communicate your weirdness / differences. Could you bear the thought that you really are neurotypical? What individuals needs of yours would not be recognised or satisfied?
Can you describe what happened during the meltdowns? In writing, the thinking process and the events. Not necessarily for the forum, but so you can give it to them. What are the key elements of the checklists or EQ or RDOS tests that strike home?
Otherwise, maybe try mixing with autistic people and seeing if your true self comes out that way - it may still not.
Just my 2p's worth.
When I had my positive diagnosis last year at age 55, it was based on two separate 1-1 interviews with different consultants.
I think the first interview was just to screen out whether a quick decision could be made one way or the other, whilst the second was in more detail. I can't remember either relying particularly on ADOS, I mentioned in the interviews that I had already read up online about how assessments for adults were made & that I hoped they weren't going to start asking me to do silly tests more suitable for children, which made the consultant laugh.
Apart from the 'Eye Contact Thing', which I usually avoid as I find it far too personal, I don't externally display many autistic traits at all, as I learned to be quite good at blending in & can read non-verbal signals fairly well (which to me feels a lot like mathematical pattern matching).
I think a lot of the diagnosis was based on my childhood recollections, as well as detailed descriptions of the quirky & eccentric way that my thought patterns seem to work. I have always had some of the more hidden autistic traits though, such as hypersensitive hearing, aversion to bright light etc.
When I finally received the detailed written report, I don't think ADOS scores were even mentioned, as much of the more formal testing with the picture books etc, would not have been appropriate anyway. In my opinion, the formal ADOS testing needs to be quite heavily revised if they want to use it for adult testing, especially with those of us who have had a lifetime to learn to appear less 'eccentric'.
Hope you manage to sort things out
Thank you for your thoughts.
No, not all people, far from it. I just have difficulty not masking it when I'm 'on display', which is is basically when anyone is around. Very few have gotten to see the inner me, and they're usually totally thrown, freaked out, or put off. I was married for just 3.5 years until 2015, and my now ex-husband couldn't understand why I was so different in private (he said with ire, I might add). When I told him I thought I might be on the spectrum, all he said was 'well that would explain a hell of a lot'. Yes, I've tried to account for sour grapes in that, but I also know he's never spoken to me when angry without there being truth behind it.
Plenty of people, including friends and other people on the spectrum, have pointed to my 'spectrumy' behaviour and personality throughout my life. Only latterly since the term Spectrum and Asperger's has entered into more common parlance have those specific terms been used.
I did pluck up the courage to join an autistic support group, but there were too many people who were too loud for me. But it led to being invited to a second, smaller group where there were noise level rules (though my sudden, very loud laugh which I normally control, has been flagged, lol) I've been learning to 'unbutton' more there and it's been a revelation to be honest. I am the only as yet undiagnosed person permitted there, voted in by the group thankfully. I've made friends with a lady there, we try to meet up for coffee and cake once a month. The first time we met outside the group she told me I was like a completely different person, it confused her and wished I would let my Auty out. I'm trying, but my social rules kick in. I had a very strict upbringing. It became emotionally abusive in fact courtesy of my mother after my Dad died when I was 7. But from early on, all my 'odd' or 'peculiar' behaviours (as she called them) were flagged and quashed. I was conditioned hard to behave not just normally, but what my mother perceived to be better than everyone else - best practice, if you will. My Mum and Dad were both cabaret acts in Variety shows all over the world, I was brought up in a home environment of entertainers/performers. I came to realise recently that my mother's conditioning has been the root of me continuously, stringently training myself in what I can only describe as social performance and costuming ever since. I learnt not to use 'big words', for example. because even into my teens, the two of them made fun of me at length when I did. SO I've learnt to tailor to who I'm talking to.
I've been estranged from my family since I left home at 19. I have what I call a 'managed' relationships with my mum and sister now. As a result I haven't had a safety net to fall back on when things went South in life, or a consistent cushion of family to learn from or even observe me. They always treated me as different, and as a child of 7 or 8 my sister (10 years older) told me she thought I was eccentric. I hadn't encountered that word yet as we only had a hand full of books in the house with creativity prized by far over academic accomplishment. So I asked her what the word meant, and she said 'intelligently weird'. I've been flying solo the whole time since leaving the place I called home, with no one friend or group of friends to build up more of a picture than that I'm just weird, but they like me for or in spite of it. I'm crap at maintaining consistent contact with anyone, I just get distracted and involved in other things and then it slides.
Yes, I can be both articulate and verbose. Except when put on the spot with it involving things I haven't processed emotionally yet and pre-prepared for expressing. I mention this because my being articulate was one of the things the main assessor flagged as not being very autistic. But I've read otherwise when it comes to women with Asperger's. Also, he said that I was successfully working the room, as it were, with the three, and then two assessors and fluidly moving between subjects of conversation. I've worked very hard to acquire those skills. And I couldn't speak for a day afterwards, and couldn't speak well the day following that. I just had to nest down at home and be alone and mentally and physically quiet. It had all just been overloading and exhausting, I'd put everything I had into it. I'm disabled and housebound with m.e. so if I want to be alone, because I can't cope with all the input and variables of people in my space and mental processing space, I just cancel my care assistant visits for the day. Then it's just me and my two cats.
I have considered that I may just be NT. That if they couldn't see it then maybe it just wasn't there. But truly, when it comes down to it, I just don't believe it and it really is the only thing that makes any sense to me, of me and of my life good and bad. I didn't come to consider Asperger's at all, even after many other saying things over the years, until I realised it had become a problem and there were things I just couldn't 'improve' or mask and it had prevented me from maintaining relationships or having healthy ones in some cases; and that I just had to face up to whatever was going on and tackle it head on at long last.
I've printed out the two lists I mentioned, and I'll be highlighting all the statements relevant to me. I'll also definitely start looking at breaking down meltdowns, mild and severe. I've done the EQ as well as the RAADS. Haven't heard of the RDOS, but will look it up. Thank you so much. :)
That really interesting to hear. My process was different.
There were three people in the room initially: a chap who dealt with the childhood development side. He would have interviewed a parent had I been able to bring her along. He left the room after about 15 minutes. all I had to offer him was my school reports from high school, some stuff from Uni, a quick chat with the care assistant who I'd only had about half a dozen times at that point and she told me the questions he's asked about things like reading/interpreting emotions and meaning, light and sound sensitivity, all of which she told him I had difficulty with and gave examples. Also a phone chat with my best friend from High School - I'm seeing her this evening so she'll be telling me what was discussed then. The other two people were a behaviourist and the main assessor.
i did have to do the child's story book exercise, plus making up a story with some little props. I struggled hard with this, but I managed it in the end thanks to a bit of inspiration from Star Wars that popped up in my head because on of the floating frogs looked a bit like Jabba the Hutt.
Other than that, my childhood was skimmed over in a matter of a few minutes. And my thought processes where only talked about when I said that a psychometric test I'd taken back when i was married and lived in the States helped me realise, after the fact, was that what I felt, what I thought, and how I behaved were most often 3 very different things. Which is one of the reasons I realised I'd found the test so difficult, frustrating and confusing at the time. That and the hideous business of the answer sheet that was pickling my brain and making me feel dizzy having to keep going from question to answer sheet and back.
I never seem to process everything during a conversation, and with important one including formal appointments, I often feel the need to follow-up with an email where I can articulate what I've processed. This assessment was no exception. A lot of what was going on in my head at the time of the assessment were things I couldn't express, and didn't think to. because I was using them. So I followed up with an explanation of them, along with information my thought processes, among other things. I didn't think to ask in the initial follow-up meeting whether admin had forwarded it to him and if he'd read it. His focus seemed to be on the ADOS assessment and what they'd been able to observe.
He did say I definitely had 'traits' but that the test and their observations couldn't confirm a diagnosis beyond anxiety.
As you say, we've had a lifetime to learn to be less outwardly 'eccentric'. I think how much I learned just in the 4 years I lived in LA working in the corporate sector on how to come across as more pleasant, accessible and joyful. How much I learned when I lived in China about confidence in taking care of personal appearance and physical grace. It's helped me get ahead with people. It's been a positive in that respect. But I don't know how to switch the bloody things off now they're in place. I don't know how to stop pushing myself.
Thank you for your kind words, and for sharing your experience, it's useful to know. I hope I can sort things out too, one way or another.
How you don't mind but I just wanted to share the RDOS result radar chart and summary numbers. Hope that's ok.
I'll add this to my file to take with me to the second follow up appointment.
I've also makes of the 'List if Female Asperger Syndrome Traits' tabulates lists and I'm a yes on all but two, and that's because I don't know the answer as they relate to what other people in some way.
Still got to work through the Samantha Craft List.
Thanks again for pointing me to the RDOS.
According to the NAS website, http://www.autism.org.uk/about/diagnosis/adults.aspx, you are allowed to seek a second opinion. And remember, you are still the same person inside, regardless of whether you have obtained a label or not. Wish you all the best in your second follow-up in 7 weeks time.
Thank you qwerty.
And I apologise for the horrible word ommissions and typos above - I must have still been quite emotional when I proof read it before hitting the submit button.
I'm just tired of being ashamed of who I am inside and hiding. But the stringent conditioning and rules I have in place seem to mean I need permission to be more me, and to let her grow. She's been trapped in the dark inner room since ever I can remember being told off in a disgusted and shameful voice by my mum to "Stop that child, people will think you're peculiar!"
Sorry for going on. I'm just working through this and trying to understand.
Thank you for the information qwerty, it's really reassuring.