Five Years Since Diagnosis

Post Reply New Topic

Next month on the 20th February will mark the five year anniversary of the diagnosis of Asperger's Syndrome that changed my life and perception of myself forever. I always knew I was different and suffered greatly in school with bullying and lack of friendships but never thought of myself as being disabled. Being diagnosed happened one week before my 23rd birthday I was just over a year out of university having graduated from a Bachelor of Social Science in December 2001. I had been unemployed since university having applied for hundreds of jobs and being knocked back on a continual basis more than likely due to what I now know is AS. I was beginning to question if I had some sort of condition my first thought was ADHD or ADD.

The diagnosis came about because one day I was talking to a girl who was a long-term friend of mine at the time sadly we have since gone our seperate ways. She was talking about her uncle who had what Elisa called autism. Having met the uncle and seen he could talk I said to her I thought autism was people who couldn't talk or could talk very little she said no and went on to explain the symptoms of Asperger's. I said "that sounds like me" and Elisa said yeah my mum thinks you have a disability (she works with autistic kids) do you want me to talk to her for you. At first I got very defensive and said I am not disabled however after about five minutes I said sure despite the fact I felt embarrased at this given I knew Elisa and her mum really well.

A week later I met Mrs. T. we discussed what she told me was called Asperger's Syndrome and the characteristics of it I became convinced this was what I had it would explain a lot. I went to tell John my step-dad. John told me he had always thought that having seen something on AS on the internet in 1996. I was never diagnosed then because mum rang the psychologist I was seeing at the time and asked her directly M.N claimed that I didn't have Asperger's I just "had social issues". Mum didn't tell me this until after diagnosis. On February 20th 2003 I went for an appointment with Dr. Richard Eisenmajer a clinical Psychologist specialising in Asperger's here in Melbourne did a number of tests and was promptly diagnosed with Asperger's. I found him to be very understanding and helpful he told me a little more about AS.

After diagnosis I did and still do a lot of research on the internet about the condition this has helped me to understand myself as well as to explain it to other people. It has also made me realise where my AS comes from given it is genetic. My dad, grandad and some cousins display characteristics. I find it frustrating at times that organisations such as the police and Vicroads do not know what AS is as they should. However through my own advocasy and pushing these kinds of organisations are now getting a better understanding. Since diagnosis I have been very open about my AS because I beleive that knowledge brings understanding even in five years I have noticed that public awareness of the condition has dramatically improved but more needs to be done.

I will always have a sadness at the ruined and misunderstood childhood I had as a result of being undiagnosed and strongly beleive that M.N should have picked up my condition when I was 16 and that Mrs. T. should have told my mum of her suspicions that she told me she had always had. Part of my knowledge push is that if it can help a child be correctly diagnosed I have done a good thing.

You are very brave and I really had great pleasure reading this post. Thank you Caster2. I'm glad that you have found a very understanding psychologist (Dr Eisenmajer). Hope more nice things are waiting in your way.

What are Vicroads?

I like to think i am brave yeah but i can have very bad days like yesterday that i am still upset over.

I hope this helps others in their quest to get an accurate diagnosis

What happened to you yesterday? Do you want to discuss it or rather just forget about it? I personally prefer concentrating on good days myself. so here is your good day point:

I think you're brave because you interact with the society for your belief.

This is what happened yesterday I also posted in in the Haven. I have had a really down and upsetting day. First I found out my gran is sick again then I got into an altercation with my uncle. I was very hurt by his actions. He started to talk to me about my grandma and how she needs protecting and he will stick up for her if he thinks me or anyone else is having a go this is fair enough.

However he then went on to say that he or anyone else wont (never really have) stick up or intervene when my mum verbally abuses me. Saying I should "stand up for myself" I tried explaining I cannot do this as I do not have the strength or courage to do it and never have if I try it comes across all wrong and that I too am vulnerable due to AS. He later minimised what mum does saying it isn't abuse it is "poor parenting" and what happens to my gran is "real abuse. It makes it feel like they aren't protecting me from her unfair critisisms etc or care about me or that she behaves like that. It also means mum feels her behaviour is acceptable and it isn't. However they will stand up for Mim (gran) and this leaves me to feel alone and uncared for.

I dont think Alan (uncle) realises just how DEEPLY hurt I was by your reactions today and will continue to be. Right now I feel so hurt and upset I have been crying all day. I strongly believe if you see someone being abused or poorly parented or whatever you want to call it you intervene in a non threatening manner. Daniel and Kate's uncles and aunts intervene for them to their mum's all they need to say is that isn't fair or what you said isn't right or go easy on her/him etc I would never expect people to go to the police or anything.

He and my aunt now claim they haven't seen verbal abuse just "bad parenting" all of which is very hurtful because I thought they really understood my situation apparently not. Also I think they are making out that my grandma gets "abused" when she doesn't sure I got upset with her a few times and swore at her once but that isn't abuse we all get upset and say things we regret later.

The wholse incident has really hurt me and it has put a real downer on the last couple of days for me.

There are four ppl saying many things it was a bit confusing to me, but I think this is the gist:
Your uncle favoured his wife over you. Your mum is abusive but your uncle and aunt made light of your plight.

Things seem worse when you haven't got allies to back you up, especially unconditional allies such as what relatives or guardians are supposed to be.

1. Summarising as above from a neutral point of view should make things seem a bit better. This is giving it a perspective and making yourself negligible. I like thinking about the universe and things also. This is a 'map of the universe': http://en.wikipedia.org/wiki/Image:COBE ... ations.gif

2. You're going the oppositte way by writing up every detail. I do this. When ppl ask me what's happened I tell them every detail in the chronological order. This is good when it's a good thing but when it's bad this'll just add insult to injury by effectively recycling the misery. I've learnt it the hard way.

3. You can't 'reform' them by being depressed about it. Rise above them will be the best way to show them.

4. To stop recursive thoughts see the 'How do I stop replaying negative memories in my head?' thread in this forum. It was very educational you never know you'll find a solution.

I hope the above helps.

I will try and sum it up a bit better for you.

1. my aunt thought I was having a go at her (I wasn't) starting the whole thing off.

2. My uncle (her sibling) says that he will always stand up for my grandma if in his words people are being abuse.

2. My uncle (and his wife) also said that if my mum is mean to me and she can be a lot then I need to stand up for myself as mum and I are two adults. To me this makes it feel like a double standard. He also later claimed to have not seen abuse just "poor parenting" which to me is minimising the situation.

I've got to turn in soon it's been a busy evening and it's very late but didn't want to before writing a reply. Are you feeling any better?

I think you do a very good job of summing up, which is something AS ppl aren't supposed to do. Hope writing that helped you see the situation with calmer state of mind.

Like in 1. being misunderstood, especially by ppl closed to you, is one of the most disheartening things. It sometimes takes a long time to clear up but I personally feel that it's better not to try too hard, it can exasperate the situation. If your uncle's a good kind of person he will come to his senses, if not maybe there'll be a chance who knows. If you stay cool with your gran he'll have to see it or else it's not worth for you to worry about how he sees you.

As for the double standard in 2. & 3. I hate it too, and in 3. your uncle's also pretending not to see your situation. That's how I understand. Hope you're starting to feel better now. Can't think anymore.