Anyone had a missed DX of AS?

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Hi,

has anyone been assessed and told they didn't have it and felt that they made a mistake? Did you subsequently get your DX? Or were you misdiagnosed first with another condition such as BPD and later got correctly DX'd?

What did you have to go through to get the correct DX in the end? Did they explain any reasons why they missed it 1st time around?

Many thanks.

Well my story is that, I was diagnosed with Selective Mutism when I was 8 or 9, the AS was detected because it wasnt well known about back then. Of course I didnt know about AS, I was told I was simply shy all my life, even when I became a teen and still had no friends. Around 16, I knew there was something wrong beyond shyness, just didnt know what? So, I moved around form several psychs, finally a school counseler turned me for an AS diagnosis at 18 (senior yr). I got diagnosed 2007.

Thanks for your story Ai_Ling.

I'm especially interested in hearing from people who have gone through this as an adult.

Sort of. Well, I was diagnosed with depression when I was 18 & 21.

i've been depressed for as long as i can remember. i rarely, if ever, identified with people my age. My dad used to call me "the old man" (and he was never nice about it either). i was diagnosed bipolar about 3 years ago, and diagnosed with Asperger's almost 2 months ago, at age 54.

I went to see a psychologist about a year ago.

She asked questions and listened carefully taking notes. I talked about by past, and that I was looking for explanations for my difficulties as a therapy councellor had suggested the possibility of AS I wanted her to look at that and explained why I thought it applied to me.

She introduced a test she said was designed for children, but since she didn't have one for adults that would have to do.

She went throught the stories in the test. I answered the questions she asked.
The last story was about growing vegetables, but she said different vegetables at the end of the story from the beginning. Being a bit confused I asked her to repeat that bit not wanting to be rude and say she got it wrong.
Nevertheless at the end of the test she said only the last story had any significance and since an AS person would have contradicted the wrong vegetable thing rather than go along with the story in general I could not be AS. I said I had challenged it but she ignored me. She said she saw I had an understanding of theory of mind and I didn't fit all the criteria of Autism so she would not diagnose. She said I had an unusual way of thinking and seeing things.
She asked me what I thought and I said I thought I did have many AS traits, more than she acknowledged, and that life experiences had made coping with that difficult.

I was disappointed with the person I saw as they were looking for marked autism as per the manual and passing over my less obvious AS traits as insignificant. I can, initially, pass for normal, it's when people get to know me they begin to see I'm different in how I see things and react to stuff.

The more I read the more convinced I am right but I'm not sure asking for a second opinion will help. I get depressed but don't mention it on job applications. I think having a DX of AS would also hinder my chances.

Thanks for your replies.

dunya your experience is so typical of what many women are battling against, including myself. Some of this might be useful to you:

http://www.huffingtonpost.com/ariane-zu ... 94706.html is an article about the ToM element

http://www.yourlittleprofessor.com/girls.html

http://www.guardian.co.uk/society/2012/ ... =digest_12 an article on the failure to sufficiently diagnose females on the spectrum.

I have also read: "In an April 2009 article, Dr. Judith Gould of the UK's National Autistic Society was quoted as saying: "We're failing girls at the moment. We are doing many thousands of them a great disservice. They are either not being picked up in the first place, but if they ask for help they are being turned away. Even if they are referred for diagnosis, they are commonly rejected."

This is quite true of adult females, as well."

"Surviving in the world often requires masking the symptoms of AS, or avoiding the situations which trigger symptoms. As I wrote yesterday, there are adults on the spectrum learn to do this very well. Especially women."

Still interested in other people's stories, thanks.

Thank you for the links, whirlingmind.
I hope more careful in-depth studies will continue to challenge assumed theories.
In the meantime I will examine my options.

Ai_Ling - indeed, I thought it showed she had not prepared very well. Also I think she had made up her mind before the test and saw what she wanted to see.

At the age of sixteen, I was diagnosed with BPD during my second stay in hospital. I was depressed and anxious, since I had no friends and was living away from home so I could attend a private school. The doctors had no idea, even though many suspected I was autistic at that time. After the BPD diagnosis, I was treated horribly and eventually quit psychiatry out of frustration. I knew one day that I would find the REAL answer.

As time passed (14 years), I knew something was up. Problems plagued me, especially my inept social skills. BPD did not explain any of my troubles. Anyway, the self injury and suicidal thoughts I once had stopped 15 years before. There was something more going on and I began to suspect I either had a learning disability or a neurological condition. I knew I had to seek help, because my problems were (and still are) interfering with my life.

I have never heard of Asperger’s Syndrome until April of this year. Autism has come up in most of my past psychiatric assessments, but I always answered no and the doctors would just leave it at that. It wasn’t something that I seriously considered, since I thought all autistic people were mute and extremely introverted.

I had signs of AS when I was a toddler. All a doctor had to do was push the autism issue and ask questions.

While reading about highly sensitive people, I came across AS and immediately knew that I had it. I mentioned this to my mother and an old therapist. They saw it but never said anything to me. It was their opinions and the reading I have done, that gave me the courage to ask for an assessment. I was properly diagnosed at the age of 34. AS explains everything.

My psychiatrist explained BPD and why I was misdiagnosed with it. It wasn’t one behaviour or reason but many. I had difficulty expressing my feelings and the SSRIs I was on made me perpetually suicidal. I felt horrible and alienated so I expressed those feelings through anger. Since, I learned how to self injure while in hospital, that along with what I just mentioned confirmed the BPD diagnosis. I never met the minimum criteria but that did not matter.

We, females manifest AS differently. It's too bad that this isn’t recognized by most professionals. I have noticed that women with more severe symptoms and/or male Asperger traits get identified a lot sooner than milder cases.

The diagnosis has helped me make sense of my life and heal from my traumatic psychiatric experience.

P.S. BPD is a VERY misused diagnosis.

Thanks Didgeeeee.

Sorry to hear you had to go through all that to finally get the correct DX.

Thank you all for writing in this discussion, it is so good to read about people who have had similar experiences to mine.

I was diagnosed with Major Depression and Social Anxiety when I was about 11. I always disliked the child psychologist I saw because I thought she talked down to me, so I played my cards pretty close to my chest and didn't really confide in her. I was caught self injuring a few times growing up, but that only made me more determined to do it in a way that nobody could discover. Fortunately I'm finally past that stage now.

I've been to several psychiatrists and psychologists and therapists over the years, and was hospitalized twice. Most of them thought I had major depression, although a few thought I had Bipolar II.

More recently, my parents took me to a psychologist to see if I had a learning disorder. I went through the 5 hour evaluation process, and at the end the woman said I had Nonverbal Learning Disorder, which I later learned is a less than useless diagnosis since nobody knows or agrees what it is, or if it is anything at all (including most mental health professionals).

I think that the woman who tested me said I fell short of qualifying for AS because I was too polite and was able to sit still for the whole process. She didn't take into account the fact that I was folding and unfolding a piece of tissue paper the whole time. I have always been fidgety, but it doesn't show because I contain my fidgetyness to things that are barely noticeable like folding and unfolding paper. I usually just wiggle my toes in my shoes and and clench and unclench my leg muscles.

As for politeness, I am WAY TOO POLITE. It is because I never know what the right thing to say in a situation is. When I was young I got in trouble a few times for speaking my mind, so I pretty much just learned to shut up and mostly not say anything at all. People are always surprised when I swear, because I guess I come across like such a goody two shoes. This always surprised me because in my head I'm often cursing like a sailor.

I just recently started researching Asperger's, and it all makes so much sense to me now. Most of the people I've brought it up to were initially dismissive of it, because I am able to socialize fairly well (they don't know how draining it is for me). I've finally got my parents on board, though, and I'm meeting with a new therapist this week who works mainly with people on the Autism spectrum, so finger's crossed that things will finally start to come together.

I'm going to read the articles whirlingmind posted now. After not knowing or understanding what was going on my whole life, it is such a relief to finally have access to all this information.

I went to my GP in Feb 2011 and asked to be referred for an assessment for autism spectrum disorder. I was referred to a psychiatrist with an interest in ASDs in adults, and after three meetings he diagnosed me in July 2011 as having an ASD, saying he knew from the very first meeting.

I had previously had diagnoses of depression and anxiety which were probably correct (though my psychiatrist questions the depression diagnosis and thinks it may all have been anxiety) but triggered by things related to my ASD.

I was having a difficult time and in September 2011, I was signed of sick from work for four months. No one involved in my case ever questioned my diagnosis, and the diagnosis was confirmed by a specialist from the local autistic society. However I also gained a diagnosis of Emotional Dysregulation Disorder either due to the ASD or Borderline Personality Disorder.

So I think I'm a bit of an exception ... I had no difficulty getting diagnosed at all, and I got a (possible) BPD diagnosis after the ASD diagnosis rather than before!!

Thanks Didgeeeee, I'm feeling cautiously optimistic.