Diagnosis

I mentioned that my mother and I were going with my 23 year old probably Aspie brother for a diagnostic assessment.

Well, it happened today. We were there for about two hours, and not that far into that two hours, she let us know that she thought ALL of us had Asperger's Syndrome.

Wow.

I knew Mum and I both had definite traits, but I really didn't think I was "Aspie enough" for diagnosis.

My brother's pretty calm about it, but I think happy.

Mum's quite excited. I think for her, it's a moment of "connecting the dots".

For me, it's like coming home. I've been searching for why I was different all my life. Now I know why.

Autism books

Hi! I've created this guide to help people looking for great books on autism and/or Asperger's Syndrome. This is only a short list of some of the great books out there, that I originally created for a college assignment. (That's why they're written in a bibliographic notation style.)

This bibliography has been roughly grouped by topic, then alphabetically by author. Though some books may have subject matter that fits into more than one topic, I have only listed them under what I feel to be the major theme or subject of the book. These are all books I own or have read, or which have been recommended to me by others.


Autistic adult autobiographies
Birch, Jen, 2003, Congratulations! It's Asperger syndrome, Jessica Kingsley, London.
Lawson, Wendy, 2000, Life behind glass : a personal account of autism spectrum disorder, Jessica Kingsley, Philadelphia.
Mor, Caiseal, 2007, A blessing and a curse : autism and me, Jessica Kingsley, London.
Prince-Hughes, Dawn, c2004, Songs of the gorilla nation : my journey through autism, Harmony Books, New York.
Tammet, Daniel, 2006, Born on a blue day : a memoir of Asperger's and an extraordinary mind, Hodder & Stoughton.
Willey, Liane Holliday, 1999, Pretending to be normal : living with Asperger's syndrome, Jessica Kingsley, London.
Williams, Donna, 1992, Nobody nowhere : the extraordinary autobiography of an autistic, Jessica Kingsley, London.

Autistic young adults
Hall, Kenneth, c2001, Asperger syndrome, the universe and everything, Jessica Kingsley, London.
Jackson, Luke, 2003, Freaks, geeks and Asperger syndrome : a user guide to adolescence, Jessica Kingsley, London.
Jackson, Nita, 2002, Standing down falling up : Asperger's syndrome from the inside out, Paul Chapman Educational.
Sainsbury, Claire, 2000, Martian in the playground : understanding the schoolchild with Asperger's syndrome, Paul Chapman Educational.
Willey, Liane Holliday & Jackson, Luke (editors), 2003, Asperger syndrome in adolescence : living with the ups, the downs and things in between, Jessica Kingsley, London.

Communication without words
Blackman, Lucy, 2001, Lucy's story : autism and other adventures, Jessica Kingsley, London.
Crossley, Rosemary, 1997, Speechless : facilitating communication for people without voices, Dutton, Ringwood Vic.
Dyrbjerg, Pernille & Vedel, Maria, 2007, Everyday education : visual support for children with autism, Jessica Kingsley, London.
Eastham, David & Eastham, Margaret, 1992, Silent words : forever friends, Oliver Pate.

Marriage, relationships and social issues for autistic people
Aston, Maxine C., 2003, Aspergers in love : couple relationships and family affairs, Jessica Kingsley, London.
Barron, Sean & Grandin, Temple, c2005, The unwritten rules of social relationships, Future Horizons, Arlington TX.
Lawson, Wendy, 2005, Sex, sexuality and the autistic spectrum, Jessica Kingsley, London.
Murray, Dinah (editor), 2005, Coming out Asperger : diagnosis, disclosure and self-confidence, Jessica Kingsley, London.
Newport, Jerry, 2001, Your life is not a label : a guide to living fully with autism and Asperger's syndrome, Future Horizons, Arlington, TX.
Newport, Jerry & Newport, Mary, c2007, Mozart and the whale : an Asperger's love story, Touchstone, New York.
Zaks, Zosia, 2006, Life and love : positive strategies for autistic adults, Autism Asperger, Shawnee Mission KS.

Parental accounts
Collins, Paul, 2004, Not even wrong : adventures in autism, Bloomsbury, New York.
LaSalle, Barbara & Levinson, Benjamin, 2003, Finding Ben : a mother's journey through the maze of Asperger's, McGraw Hill.
Moore, Charlotte, 2006, George and Sam : two boys, one family, and autism, St. Martin's Press, New York.
Paradiz, Valerie, 2002, Elijah's cup : a family's journey into the community and culture of high functioning autism and Asperger's syndrome, Free Press, New York.
Stacey, Patricia, 2004, The boy who loved windows : opening the heart and mind of a child threatened with autism, Da Capo, Cambridge MA.
Waites, Junee & Swinbourne, Helen, 2002, Smiling at shadows : a mother's journey through heartache and joy, HarperCollins Australia.

Textbooks, scientific and psychological works about autism
Attwood, Tony, 2006, The complete guide to Asperger's syndrome, Jessica Kingsley, London.
Bashe, Patricia Romanowski, ...[et al], 2005, The OASIS guide to Asperger syndrome : advice, support, insight and information, Rev. ed., Crown.
Biklen, Douglas (editor), 2005, Autism and the myth of the person alone, New York University Press, New York.
Lovecky, Deirdre V., 2004, Different minds: gifted children with ad/hd, Asperger syndrome, and other learning deficits, Jessica Kingsley, London.

Finally another autism/"DID" account worth reading.

Australian fantasy writer and long time friend of Donna Williams, Caiseal Mor, has come out of the Autism Spectrum closet, with his newly published autobiography, A Blessing and a Curse: Autism and Me.

Caiseal grew up in rural Queensland in the 1960s, when virtually nothing was known about autism out here. Misdiagnosed multiple times, he was also severely physically abused by his parents with the sanction of the local doctor, to try to "cure" him of his autistic behaviours. Like Donna, he created what he calls "characters" to help him survive in the world.

I am halfway through this book and I am loving it. Caiseal is a born writer, and he evokes not just the horror of his treatment, but the beauty of the surroundings and his experiences of the world as an autistic person. This is not a book that gets you bogged down in the "trauma". It is a moving account of Caiseal finding himself, his own identity - that of an autistic man - and speaking out about it.

If you get a chance to read this, do.

A Blessing and a Curse: Autism and Me
Caiseal Mor
Jessica Kingsley Publishers
ISBN: 9781843105732
JKP page for A Blessing and a Curse

Caiseal's website

And his blog

Donna Williams interviews Caiseal on her blog about his life, and the book

There are some interesting points in this interview, in particular, the deception used by his former publishers and publicists, and the lengths they went to to hide Caiseal's autism from the public.

*********************

On a completely different note, Hugh Laurie got awarded an OBE. I wish it had been a Knighthood, because "Sir Laurie" just sounds funny. Oh well, maybe next year. *lol*

Big "AHA" moment for me, probably a no brainer for anyone who knows me.

(This is a reposted entry from another online journal, from the 9th May, just to start this blog off.)

Pretty much my whole life I've been looking for something. Searching for explanations for why I am the way I am, how I act, interact and so on. As a child I thought I was an alien, or adopted (though my strong resemblance to both my parents made the adopted one pretty hard to convince myself of). I didn't feel I belonged.

At first, it was PTSD. Yes, I did have it, and for a while it pretty much covered the issues I had. My attention span was poor, I dissociated, I had trouble relating to others, and I assumed this was all due to that. But then the nightmares, high anxiety and depression abated, and most of the genuine PTSD symptoms were gone, but I was left with still the same issues.

I moved on to multiplicity. It fit with a few things. I knew I had soul-bonded in the past, but the rest was an uneasy fit, even median didn't explain things right. Though I felt I had things in common with the multiple community, it wasn't what I was searching for.

Then this last week or two, I started reading a book. I'd read other books on autism and Asperger's in the past, and even done an online test that rated your likelihood of having Asperger's (I can't find my old score, though I posted it here. My score today was Your Aspie score: 154 of 200 Your neurotypical (non-autistic) score: 60 of 200 You are very likely an Aspie.) But I didn't seriously consider it in relation to myself. The book I started reading is called Different Minds: Gifted Children with AD/HD, Asperger's and Other Learning Deficits by Deirdre V. Lovecky. And reading it, suddenly everything makes sense, not just about myself, but my family.

This last weekend I was at mum's place, and I finally asked her, "Why was William (middle brother) never tested for AS?" Her reply was that in those days (the 80s, pre-Asperger's paper in English) they probably wouldn't have known what to look for. She then related to me a story about a church family nearby to her. Their son, who is good friends with William, had been diagnosed two years ago. When the family told her about it, they said to her, "We think William has it too." Which is right on, because he and William are very alike. My uncle is the same. He eats the same meal every night, and has done for probably his whole adult life. It was always a source of family amusement and slight confusion that William and my uncle could be so alike in their eccentricities, when they hardly saw each other during William's childhood. It was always assumed that it was genetic patterns of behaviour showing themselves, and that was right on the money.

Spreading wider, though, we've also talked in the past about how if my youngest brother Roger was a child today, he'd be prescribed Ritalin in a heartbeat. And my cousin, Jessica, also. They were both very full on, high energy, impulsive, risk taking, tantrum throwing kids. (And by "tantrum" I don't mean little, I mean full-on, rage-for-hours, take-the-hammer-to-things-in-frustration-or-anger rages. And I mean it about the hammer.)They'd very much fit in the current day diagnostic criteria for childhood ADHD. Both calmed down, within a matter of six months, when they hit puberty - a very abrupt personality change, quite jarring, really. Many kids with ADHD do do that, though others will have to manage their ADHD their whole lives.

Roger no longer has the rages, or the hyperactivity, but he still speaks very fast, running his words into one another, and he has been trying to manage his chronic insomnia his whole life. He has always thought, drawn and constructed in 3D. Even from as young as four, his drawings were 3D representations. He was forever driving mum nuts bringing home dead bits of machinery to take them apart, to see how they worked. He's now an IT and database technician in the library at one of Sydney's most elite private boys' schools, head-hunted for the role at the age of eighteen by one of mum's university course ex-classmates who is the librarian there. He programs in his spare time, and he is obsessed with Sega. What doesn't get saved of his salary goes to buying rare cartridges and systems on eBay.

So, four family members living who would have at some point or still do fit with a diagnosis. Then there's the rest of us, who don't seem to have enough to be diagnosed with anything, but have traits and behaviours from one or the other or both, all jumbled up. So much of my mother's behaviour and my own behaviour makes sense now. Just as examples, I have trouble with attention span and holding things in short term memory, transforming ideas into concrete workable goals and breaking large projects down into individual elements (like in ADHD Inattentive Type) but I have social issues to do with things like talking over people, reading other's emotions and non-verbal cues, taking people too literally, and doing things automatically like wandering off or pulling out a book when I'm bored in social situations (which is very AS).

I keep remembering things from childhood, or recently, or just traits about myself or my other family members that make sense now. My mother not noticing my depression, or not acknowledging it, while blithely talking about her day, church or work. It wasn't that she was meaning to be rude or insensitive so much as she had difficulty comprehending my feelings. My sense of alienation and "differentness" in childhood that made me feel so separate from others - and that others picked up on and used when they bullied me. My intense dislike, discomfort and even phobia of social situations. My occasional sensory overload that can lead to me shutting down - often linked to crowds, noise and odours.

A big issue was and still can be my intense obsessions, and difficulty focussing outside my interests. An example being, in high school, Year 11, I started the year in Related (Advanced) English. Our first work - The Crucible. It fascinated me. I was able to discuss it in depth and with opinions in class, but at home, I got sidetracked, searching the internet for hours at a time for information about the original Salem witch trials. Though I loved the challenge of the text, I didn't get any of my homework or assessments done, because I spent all my time looking up about the witch trials, rather than looking for information that was relevant and doing the work assigned. I ended up having to drop down to General English, which had simpler requirements. Around that same period, maybe slightly earlier, I had another obsession - the Titanic, spurred on by the release of the movie. Does anyone normal get excited by the discovery of a cargo listing, or descriptions of the kinds of rivets used on the real ship VS those shown in the film? I did. At one point I had over 100meg of information of the Titanic on our old, family 7gig hard drive, which was also weighted down with my brothers' computer games. (I learnt to keep all my personal files in a folder sneakily renamed "winword" to prevent my stuff being deleted in occasional brotherly purges to free up hard drive space for big games. It worked! They never found it after that.)

I'm determined this discovery isn't going to become an excuse for anything. But goodness, it helps. Already, in the last week, I've found it easier to recognise problems and modify them. I've completed my first assignment for TAFE, with a bunch of help from my partner. And I've been able to put a reason for why I find certain things so difficult. I know it's not my fault, that it wasn't that I just didn't try hard enough, wasn't committed enough, was too busy "daydreaming", too lazy. I have issues that have a reason, and there are things that I can do to work with or around them, to get done what I have to do, and live my life more fully, without self-blame.

Okay, I know some of you are going to be sitting there saying, "Ruth has ADHD and AS issues? Pfftt. I knew that years ago." But I know now too. So we're on the same page, finally.

(My friends are encouraged to reply if they got through this whole post, even if it's just to say "Well, duuuuh!")