Susan's Blog

Thursday, December 26, 2013

Call for Interviewees for my Third Autism Book

As some of my readers may know, I am working on a third autism book. (My two earlier books are Making Peace With Autism and The Autism Mom’s Survival Guide (For Dads, Too!). I need to talk to parents of autistic children, age 18yo +, particularly low-IQ but also any child considered “low-functioning.” If you are such a parent and you would give your legal, wholehearted consent to my using your first name, your state, your child’s first name, and his/her age, please contact me at: susan@susansenator.com for an interview. The interviews will be either over the phone or by skype.

* If you are a parent whose child is in transition to adulthood, I will want to know where you are in the planning process — even if you are scared sh*tless of it — for your transitioning child. I will ask you your story, I will want to get a well-rounded view of your family life, your autistic child, and your worst fears for him/her.

* I also want to talk to parents of older adult children, particularly those in their later years, moderate-to-severe autism — fairly low I.Q. What is your family life like? What’s great about it? What’s not so great? What is your adult child like? What does he do during the day, where does he live? How have you planned for when you are gone? How did you face this problem?

The working title for this one is Autism Adulthood: Facing the Challenge Head-On.  What follows is the keynote, or summary of the book so far:

This inspiring, honest, and essential book could not be more timely considering that the big bubble of children on the autism spectrum will soon be bursting out of the public education system.

Parents are terrified of what life will be like once their autistic children graduate high school. Particularly if their child is severely affected by any or all of the following– language, communication, behavior, cognition –  parents of  graduating autistic child can be anxious, sad, and likely pretty ignorant about the future. They commonly refer to autism adulthood as an abyss, as falling off the edge of the world. And to be fair, autism adulthood can feel like a soul-sucking challenge. But autism adulthood, like any phase in a child’s life, can also be exciting and joyous. And, like autism childhood, the happiness we find is not always grand, obvious, or permanent. Parents need to know that autism adulthood can be complex and plain old hard work, it is also a time of growth  and possibility. Yes, there are terrible challenges and a lot of legwork and advocacy; autism families on the moderate-to-severe end of the Spectrum need to have an honest picture of what autism adulthood is like. With this book, they will learn from example how they can meet the challenges of autism adulthood head on, and help their adult children achieve a fulfilling life.

Autism Adulthood is unique in that it features a real family – my family– as well as conversations with other autism parents and some autistic adults themselves. The book illustrates the lives of autism adult families, particularly the families of our less-discussed severely autistic adults.The narrative unfolds as a memoir-like story, but also thematically. Punctuated by relevant anecdotes from members of the autism parent community, each part of the book describes different situations and problems that I, my husband Ned, and my son Nat faced, and their actual resolutions. Each section also looks at other families and their strategies, plans, fears, joys, and solutions to autism adulthood issues.  Autism Adulthood is one of the few books of this sort out there with a real family story, as well as portraits and viewpoints of other families, plus essential resources and organizations, told in my trademark warm, honest, and approachable style.

Thank you for letting me tell your story!

16 comments

If you want a residential supervisor’s perspective as well, I’d be more than happy to talk with you. I’m sure you could also talk to your son’s provider…. But I just wanted to offer.

— added by Saskia on Thursday, December 26, 2013 at 10:59 am

I’m autistic and 18yo+ (because I’m 50yo).

Therefore, I note with great concern that you are referring to adults like me as “children.”

You ask to hear from “parents of autistic children 18yo+” — why not “parents of autistics 18yo+”?

— added by Kate Gladstone on Thursday, December 26, 2013 at 12:40 pm

Kate, I’m using the term “child” not to infantilize, but in exactly the way you suggest. The reason I include the word “child” is to emphasize that I want to hear from parents in their caregiving role. Perhaps, as you suggest, it is enough simply to say “parents of autistics 18yo+” Thanks for the suggestion.

— added by Susan Senator on Sunday, December 29, 2013 at 8:22 am

We’re a few years out from thinking about all this (although it’s coming up soon), but I’m certain your book will be a valuable resource for all of us. I admit, the whole transition process scares me to death. I just hope we can find both programming and housing for my son that comes close to matching the mostly wonderful experiences he’s had so far. Looking forward to reading your next endeavor!

— added by kim mccafferty on Thursday, January 2, 2014 at 12:48 pm

Thanks, Susan, for bothering to understand.

— added by Kate Gladstone on Thursday, January 2, 2014 at 6:21 pm

I’m really grateful to you for pointing it out. I am changing how I talk about it now.

— added by Susan Senator on Saturday, January 4, 2014 at 5:45 pm

Good to know! … And I see you’ve changed the wording of your post. (You might feel amazed to know how often a parent or professional who has made this sort of slip will promise to change this, but will not change it: while incorrectly remembering having changed it. When that happens, the person is often angered at whoever reminds him/her that the change has been only talked about, not actually done.)

— added by Kate Gladstone on Saturday, January 4, 2014 at 6:02 pm

To add to Kate’s comment, you might want to also hear from all those children who grew up, and are still autistic. They might have a thing or two to say about their role in being on the receiving end of the caregiving. For one, you will hear about the lasting PTSD of those inflicted with ABA…. and on and on. Good luck with your project.

— added by Henny Kupferstein on Saturday, January 4, 2014 at 6:07 pm

I forgot to add that you would learn about transitions into college, and the hellish internship experiences, and struggles with voc rehab. For many individuals, having greater IQ and mastery of their skill than those trained to train them, causes explosive conflicts and loss of employment.

— added by Henny Kupferstein on Saturday, January 4, 2014 at 6:12 pm

I concur with Henny that you need to hear from autistic adults (with OR without children) who were on the receiving end of whatever the parents were doing. Just because I have no children doesn’t mean I wasn’t shaped by growing up autistic. Let me (and Henny) know if you’re open to hearing from people like us, about how we were brought up: what should, and shouldn’t, have been done.

— added by Kate Gladstone on Sunday, January 5, 2014 at 12:33 pm

Henny, you’re right. I do want to know. I may not be writing the sort of book I thought I was — the thing keeps evolving — but I do want to hear.

— added by Susan Senator on Sunday, January 5, 2014 at 12:37 pm

Kate, yes, I would like to hear. Do you want to email me some of your thoughts: susan@susansenator.com

— added by Susan Senator on Sunday, January 5, 2014 at 12:38 pm

Would you be able to do a phone interview? For me, that would be far easier — and for both of us, would allow a freer, more interactive and immediate flow of Q-and-A. In hopes that your answer will be “Yes,” I’ll e-mail you my phone-number. I’ll be at home tonight, tomorrow, and tomorrow night.

— added by Kate Gladstone on Sunday, January 5, 2014 at 12:46 pm

Yes, great! Can I record you, to have quotes for my book?

— added by Susan Senator on Sunday, January 5, 2014 at 1:19 pm

Yes, indeed! Feel free to record EVERYTHING,

— added by Kate Gladstone on Sunday, January 5, 2014 at 1:22 pm

Yes, definitely! And yes, I am planning to talk to my son’s house manager.

— added by Susan Senator on Sunday, January 5, 2014 at 1:24 pm