I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults
This e-book started as a series of blog posts here at Musings of an Aspie. The response to the posts was so positive that I decided to expand them into an e-book. The result is I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults. If you are an adult and suspect you might be on the autism spectrum, this concise guide can help you understand what autistic traits typically look like in adults, how to decide if seeking a diagnosis is worthwhile, what an adult ASD assessment consists of, how to find a professional near you who does adult assessments and what to expect throughout the process. There is also a section on how to decide who to share your diagnosis with and how. This is the guide I wish I’d had when I was struggling to understand how adult autism diagnosis works. Whether you read it here on the blog or as an e-book, I hope you find it helpful!
Here are some resources that I’ve found helpful in my search for more information about autism and Asperger’s syndrome. Most of the focus is on the adult ASD experience.
The Complete Guide to Asperger’s Syndrome
The Complete Guide to Asperger’s Syndrome was the first book I read about AS and it’s still the best I’ve come across. Dr. Tony Attwood takes a no-nonsense approach to explaining what Asperger’s Syndrome it and how it affects people at all stages of life. He writes in a conversational style that makes some of the more technical aspects of AS easy to understand for the layperson without “dumbing down” the subject matter. He addresses the symptoms of AS as they manifest in both children and adults. His tone is frank but unerringly positive.
Each chapter is a mix of background information, anecdotal stories from his practice as a clinical psychologist and strategies that adults and children with AS or the supportive people in their lives can use to tackle the many challenges that AS presents. There is a wealth of additional reading material referenced in the text, from scientific studies to online resources and online resources. If you get just one book about AS or are looking for a good first book, this is the one.
The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband
This is probably the most enjoyable Asperger’s book I’ve read so far. The Journal of Best Practices is a funny, touching and at times enlightening look at one man’s quest to fix his marriage. David Finch reacts to his Asperger’s diagnosis by developing a list of “best practices” for his life. The results are fascinating to read though not always successful. Finch is a fantastic writer with a wicked, self-deprecating sense of humor. He isn’t afraid to share stories that make him look like the villain. He isn’t above admitting that he was wrong. He lets the curse words fly and allows the reader a peek into the messy adult world of an Asperger-NT marriage.
Although I sometimes struggled to relate to the problems he had to overcome (hour-long showers, studying his face in the mirror every morning) I truly enjoyed reading about his growth and the lessons he learned over the course of the first couple of years after his diagnosis. Finch has a unique perspective on coming to terms with Asperger’s later in life.
Aspergirls: Empowering Females With Asperger Syndrome
Aspergirls is a slim book that you can probably read in a sitting or two, though I don’t recommend that approach. Rudy Simone takes an honest and sometimes disheartening look at women and girls with AS. I had to put this book down more than once because I found the personal stories of some of the women too difficult to read.
But as one of the few books dedicated solely to women on the spectrum, it has its merits. Simone’s approach is anecdotal and personal – a mix of first person accounts and practical advice for girls and women with AS. Because the book tries to touch on so many age groups, you may find that you feel too old or too young for much of the advice.
If you’re recently diagnosed or a suspected aspie, you may want to wait a bit before reading this book. I’d also caution against parents simply handing this book to their daughter with AS. While the tone is upbeat, there are some bleak characterizations of women with ASD that teens may find discouraging or even frightening.
The OASIS Guide to Asperger Syndrome
The OASIS Guide to Asperger Syndrome is a big book and one that’s aimed at parents, so adults may find it of limited use. However, there were a couple of sections that I found very useful. The first few chapters are a great primer on AS. The symptoms of Asperger’s syndrome and the impact AS has on the daily life are presented in a logical, easy to understand format with just enough detail.
Much of the rest of the book is dedicated to managing a child’s AS within the school system, AS interventions for children and medication. The authors, Patricia Romanowski Bashe and Barbara Kirby, are mothers of sons with AS, not professional clinicians or researchers, and this shows at times. There is an understandable bias to some of their writing–particularly when it comes to the sections on the value of certain therapeutic and pharmacological interventions. And their attitude toward late-diagnosed adults with AS is downright patronizing.
Still, I’m giving this a qualified recommendation because I found that the informational value of the book outweighed the biases.
Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum
Ask and Tell is an anthology with contributions by six autistic writers. Like most anthologies it’s a bit uneven in both quality and content. However, I got enough out of two of the six chapters for me to recommend it. The chapter titled “Help Me Help Myself: Teaching and Learning” is by far the one I found most useful. Kassianne Sibley lays out a detailed plan for learning self-advocacy. It’s aimed at young people, but the principles and process she outlines can easily be adapted by autistic adults who are new to self-advocacy. I especially liked the specific examples of written self-advocacy materials that she provides. The other chapter I found informative was “Building Alliances: Community identify and the Role of Allies in Autistic Self-Advocacy” by Phil Schwarz. His concise history of other advocacy movements that the Autistic community can draw on presented a lot of material that was new to me. The remaining chapters are an odd mix of social skills instruction, IEP design and case management, none of which felt relevant to me. Of course, if you’re the parent of a student who wants to manage his/her own IEP, then that chapter would be very relevant.
Sex, Sexuality, and the Autism Spectrum
I’ve been searching for a resource that gives a sensitive, honest, respectful treatment of sex and sexuality for autistic people and this is the closest I’ve come to a solid reference. Sex, Sexuality and the Autism Spectrum is a good guide to many of the issues that arise during puberty, adolescence and beyond. Which isn’t to say it’s only a book for teens or young adults. Author Wendy Lawson spends a great deal of time talking about all aspects of developing and maintaining relationships, beginning with the most basic questions of how relationships are formed and how to know when another person is interested in a partner relationship. She also addresses key issues for autistic individuals like consent, safety, disclosure and communication.
Unlike other books I’ve read about ASD and sexuality, she takes a positive approach to same sex relationships and transgender identity. The only aspect that wasn’t touched in detail was asexuality as an identity. In spite of the title, this book has a heavy emphasis on relationships and doesn’t address some of the more practical aspects of sex in the detail some autistic persons might need. For that, I’d recommend pairing it with a good basic sex education guide.
Twirling Naked in the Streets and No On Noticed
I followed along as Jeannie Davide-Rivera wrote Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism and each time she added a new chapter, I raced over to her blog to read it. I was hooked from the beginning. The stories that she shares from her childhood are so vivid and well written that the “characters” in them began to feel like people I knew. I started reading because I’m also a late diagnosed autistic woman, but after a few chapters, I found myself completely engaged in the twists and turns of Jeannie’s life.
So much of what she writes about really hit home with me. I constantly found myself nodding along with her stories and laughing at the dark humor she finds in sometimes difficult situations. I think the thing I like most about this memoir is that it isn’t the story of an “autism celebrity” like David Finch or Temple Grandin and it isn’t a tale of unending sadness and woe either. Jeannie is a regular person who has struggled with a lot of stuff that autistic people struggle with and learned from it and she shares her experiences with tremendous honesty and humility and humor. This is a great read if you’re a woman on the spectrum and if you want to understand what it’s like to grow up as an undiagnosed girl/young woman.
Ten Things Every Child with Autism Wishes You Knew
This is going to sound like a strange recommendation for an adult AS resource list, but Ellen Notbohm has written a love letter to her son Bryce in this book and it may be the most positive thing I’ve read so far about ASD. Ten Things Every Child with Autism Wishes You Knew is a small book with a simple structure–it grew from a newspaper column–but its message is profound. If you’re feeling a little down about being as aspie or you want to wrap yourself in a positive, affirmative message about the possibilities rather than the limitations of being on the spectrum, I highly recommend this book. Ellen Notbohm’s son is a very lucky boy.
Asperger’s From the Inside Out: A Supportive and Practical Guide for Anyone with Asperger’s Syndrome
Carley is the founder of GRASP, an advocacy organization for people with AS. He is a late-diagnosed aspie and the father of a son on the spectrum. He was also a professional diplomat prior to getting into AS advocacy,so he brings a wide range of experience to his writing. Asperger’s From the Inside Out takes a practical approach, giving the reader background on Asperger’s syndrome in the context of Carley’s personal experiences, both in his family and as an AS support group leader and advocate.
This was probably the tenth book I read on AS so I didn’t find a lot of groundbreaking new information here. I think it would make a good second or third read–after a more thorough guide like Attwood’s. Carley’s approach is honest with a positive, can-do slant. He understands the language of the ASD community and is sensitive to the issues faced by late-diagnosed adults, including the controversy around assimilating.
Asperger Syndrome at Work DVD: success strategies for employees and employers
I found this DVD at my local library and it’s a gem. It introduces six people who are on the spectrum and who hold a variety of jobs, from bookkeeper to vet tech. The host, who is also an aspie, interviews the people with AS, their bosses, co-workers and job coaches. There are a lot of great tips about getting and keeping a job if you have Asperger’s and they’re targeted at people who are on a wide range of places along the spectrum. Although I’ve been self-employed and haven’t had to hold down traditional job since I was 18, I found the program practical and informative. The interviews with the job coaches and supervisors were especially interesting because they provided an honest, balanced NT view of AS employees.
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Links to some online resources I’ve found helpful as an adult on the spectrum:
Aspies Central discussion forum: A smaller discussion group aimed at aspies.
Autism by Autistics Facebook group: Links to information about autism written by autistic adults.
Autism Go To Resources: A site with links to online resources for adults with autism as well as parents and teachers.
Autism Hangout Videos: Lots of videos about autism-related topics. I especially like the videos featuring Dr. Tony Attwood.
Autism Women’s Network: Community, advocacy and resources for autistic women and girls.
Thinking Person’s Guide to Autism: Balanced and referenced information about autism, often written by autistics.
Wrong Planet discussion forums: A very active autism forum with a little something for everyone.
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This resource list is by no means exhaustive. As I continue reading, researching and exploring the internet, I’ll continue to update it with new finds.