Question: Older Autistic Adults is a research book with 150 autistic adults through questionnaires. How did these three incredible people find each other and decide to do this book? Besides, I would like to ask what your aim was in writing this book?
I'm a social worker and a minister in the Swedenborgian Church. About 7 years ago, my social work practice included several autistic children. I started reading about autism to better help them. Once I started reading Rudy Simone's Asper Girls, I suddenly KNEW I was autistic! I went to see a neuropsychologist for confirmation. I was curious about being diagnosed in my '60s. There had to be other older adults getting diagnosed. How were they managing it? I wanted to find some other older autistics and interview them. I started attending support groups in Maine and met Rob Lagos. I went to Asperger/Autism Network (AANE) in Massachusetts support group for autistic therapists and met Eric Endlich. They each expressed interest in my research and brought tremendous writing and research skills I didn't have. We became a team. A social worker, a psychologist, and a statistician are all older adults diagnosed with autism.
With the team effort, we developed an online questionnaire and sent the link to autism organizations worldwide. As a result, we had about 300 people who started a questionnaire. About 150 completed it and became part of the study.
Writing the book with Erik and Rob and getting to know so many other older autistic adults was transforming for me. My social work practice is almost entirely autistic adults. I have had to develop a waiting list for all those seeking services.
A: Dr. Endlich
Not long after I discovered in my 50s that I was on the Spectrum, I attended an AANE meeting for Mental Health Providers on the Spectrum. It was a wonderful experience to meet others like me, and one of them was Wilma Wake. We connected immediately, and she invited me to contribute to the book. It turned out that our complementary skill sets worked well to create this book.
Older autistic adults grew up when autism was poorly understood. Most of us didn't learn we were on the Spectrum until after age 40–and in some cases, much later. Autism is diagnosed much earlier now, so our generation represents a unique experience. We wanted to tell that story.
Wilma and I met through the autism support group in Portland, Maine, and we co-facilitated the group.
Wilma noted a scarcity of literature on older autistic adults and was looking for answers to specific questions:
- How were the autistics of our generation impacted growing up?
- How did the impact vary by gender, age, sexual orientation, and environmental factors?
- Did getting diagnosed with autism improve our lives?
She decided that it would be good to create our own study. It was modeled after the Nine Degrees of Autism by Philip Wylie in terms of different stages of awareness of autism.
She recruited me to help with the I.T. work – creating the online survey form, using number crunching and statistics to answer questions, extracting the data, editing, and providing my own experiences and perspectives. All three of us are on the autism spectrum, and we are all qualified survey respondents. This would be the first book of its kind. It provides the perspective and awareness of autism of people in the baby-boomer generation and what we were up against.
Q: Professor Tony Attwood noted in his preface to your book that "The lost generation at least being discovered and accepted." Do you think there is enough discovery and acceptance with this generation? How did this book help communities with this discovery for the last year after its launch, and how would you like to see more discovery and acceptance?
There is still little research in this area. Our research idea came from Philip Wylie's 2014 book very Late Diagnosis of Asperger's Syndrome: Autism Spectrum Disorder. I consulted with him and hired him to do an initial draft of a questionnaire based on the questionnaire he used for his study in Great Britain.
Our book just helped scratch the surface. There are so many older adults seeking diagnosis and therapy. I'm starting to do more groups and less individual counseling to accommodate all the needs for services.
A: Dr. Endlich
I'm sure there are still many older adults who remain undiagnosed. Autism looks different in older adults because we've had many years to learn how to adapt and sometimes conform to social expectations. Children are more likely to be diagnosed because they are under the watchful eyes of their parents, teachers, and pediatricians. Moreover, not all clinicians are skilled at recognizing autism in adulthood.
Acceptance improves as more of us speak up and tell our stories. I hope the book, representing 150 of our stories, helps with that process!
I think that discovery and acceptance have increased, but more improvement is still to be made. I believe our book is certainly a big step in discovering the experiences of our generation. I have seen of late more surveys out dealing with older autistic adults. It is hard to say at this time how much our book has helped communities in terms of the discovery, but I can say we have had very positive comments and reviews.
One comment I have received from clinicians I know personally is that it would serve as an excellent textbook and material for learning for other clinicians and other people on the autism spectrum.
Q: What was the most challenging part of writing this excellent book for you?
I think the tremendous amount of proofreading from all the questionnaires and interviews. Also, towards the end of our writing process, AAPC was sold. So, it took some time to finalize the work during the transition process.
A: Dr. Endlich
It was difficult to find much prior research. There are relatively few studies of autistic adults, much less old autistic adults.
I think, to my observations, at least one of the most challenging parts was making sure that the text, articles, and findings were consistent with each other and to make the book error-free. Also, the back and forth editing of our book. Another challenge was recruiting respondents from as many worldwide cultures as possible, which was hard to attain since awareness and acceptance of autism and diagnosis differed by culture and still does to some extent.
Q: In your book, the 'Response to being on the spectrum' part, Participant Comments section, there are seven different groups of comments from the autistic adults. While some individuals are proud of being autistic, some are ashamed of autism, trying to be expected. What would your suggestions be for the individuals who are especially late diagnosed?
A: Dr. Wilma
JOIN SUPPORT GROUPS. I have worked as a therapist with dozens of older autistic adults. Almost all of them were isolated, most knowing no other autistic adults. I encourage getting to know "our people." Once they do, it almost always increases their self-esteem.
SELF-ADVOCACY: I emphasize that the experience of a diagnosis of "autism" is a shock-like someone realizing they were gay 20-30 years ago when support communities were just starting to advocate for the healthy existence of a range of sexual orientations. At one time, "homosexuality" was in the DSM as a mental illness. Currently, "autism" is considered a mental illness. We need to foster the attitude of the rich contributions to society that are made by a range of "neuro-diversities." I encourage connecting with organizations like Autistic Self-Advocacy Network.
A: Dr. Endlich
Know that a whole community is waiting to welcome you! Autism is simply one type of human difference, and it comes with unique strengths and challenges. Embrace who you are and find the support you need.
I think it may be especially difficult for those individuals, as those who were diagnosed very late likely had a lifetime of masking their autism and adapting to a different type of culture. I think we must accept those who developed other comorbidities as a result (which encompasses many of us) of the above and encourage clinicians and others on the autism spectrum to exercise patience. These people need exceptional support in their newly found identity. My suggestion to those people would be to not blame themselves for the adjustments, masking, and adaptations they had to make and reject blame from others for this.
Q: There are great stories in your book that have been an absolute thrill to read. Like the story of Tim's diagnosis at 73 years old and Yvonne - the inspiring woman diagnosed at 56 years old and has changed her life and thousands of others! That put a massive smile on my face. How do you think we can help older autistic individuals, especially those diagnosed late?
Well, I think the connection with other autistic adults, as above. Also, our book is based on a developmental framework from Philip Wylie and others. The Nine Degrees of Autism: A Developmental Model for the Alignment and Reconciliation of Hidden Neurological Conditions. is a collection of chapters by autism specialists.
A: Dr. Endlich
Step one is self-awareness, recognizing who we are. After that comes the journey to self-acceptance, which takes longer for some of us than others. Finally, connect with those who've already traveled down this path so that your trip will be a little easier.
I think I answered this question mainly in my last response – we should be incredibly supportive of those diagnosed at a late age and encourage them not to blame themselves and that they can fit well in the autism community.
Q: What is one last thing that you would like to say to the thousands of people who read this interview?
I agree with Rob's comment on "neurodiversity." Researchers are discovering various neurological types, with each type having its own unique contributions to society. We are moving away from wanting to "cure" autism to want to celebrate the rich diversity it brings to the world. Don't live in isolation after diagnosis – join a vibrant community of autistics, such as AANE in Boston and New York (with most information and programs being online)
A: Dr. Endlich
Being autistic is a complex and wonderful thing. Take time to appreciate yourself and be patient with your imperfections. We're all in this together, and we can create a more inclusive world.
I think that even younger autistics have struggled to get themselves accepted. Their identity is recognized, and they can also learn from our book, as much – maybe most – of our text applies to autistic adults of all ages. But we grew up when autism was significantly less recognized than today and at a time when most people never even heard of it.
We also grew up in a time when most professional clinicians were ignorant of what autism really was and what it entailed. There is still much lack of knowledge about it among clinicians. Still, more and more people have become educated on it. It is undoubtedly the case that if you have experienced autism, you likely have a significant head-start in terms of insight. We should be listened to for this. However, simply taking courses on abnormal psychology is not enough.
We should also use the term "neurodiversity," as it can apply to other types of neurodivergence besides autism. We should be aware that many people see and experience the world differently and have different rates of development.
We'd like to extend a heartfelt THANK YOU to the authors of Older Autistic Adults for taking the time to produce this book, which has already helped a large number of people and will continue to help them.
The interview was fascinating, and we came out of it with a lot to consider. If you're interested in learning more, we recommend reading the book. It's jam-packed with eye-opening information, and it's one of the few places you'll find first-hand accounts from autistic adults themselves.
You may buy the book below at a reduced price. Thank you for reading!