When my husband and I first realized in 1994 that we were entering the world of special needs parenting, there were very few books as guidelines. When autism entered our vocabulary, the first thing I read was Bruno Bettelheim's The Empty Fortress. Do you know how badly that sucked? Sonrise soon followed. Fortunately, I also happened upon Lorna Wing's work, but even that was woefully short on detailed information and hope. The nineties were not easy years to be a parent of kid(s) on the spectrum. The internet was in its infancy, there were few families in the communities we lived in who had children on the spectrum. They were lonely years.


Fast forward more than a decade to the birth of our daughters, and it's a different ball game. The online autism community is large, robust, and has something to offer every parent and every individual on the spectrum. Parents belong to thousands of forums and groups, blog, facebook, tweet, and otherwise find ways to connect with others with similar interests and issues. 


Want a supportive community that thinks about autism the way you do? Can't find it in the real world? You can find it online. Want controversy and the diversion of arguing with others? Hah, well, we have that in abundance, as well. You can get a little of both, too, and in that way find your niche in this world.


We feel, when we first get that autism diagnosis (or any of the others our children get) bereft, at a loss, and too many of us have gotten incredibly shabby treatment at the hands of those we placed our trust in to find the answers to our questions. Twenty years ago, it was even lonelier and there was little information available to parents, few treatments (and on a plus, few controversies). Today, there is a wealth of information out there, a plethura of voices offering help, advice, theories, products, support, and too often, woo. We once had too little information, too few avenues to explore. We now have so many, and it's equally daunting.


Ken Siri and Tony Lyons have two new, complimentary books for parents who have autistic children. They are guidebooks, filled with 1,001 tips (and more), taken from parents and individuals in the autism community. 
Where once I started my journey as a mom to a kid on the spectrum with  a horrible book (Bettelheim, at 489 pages), a marginally better book (Kaufman, at 353 pages), and a slim but finally somewhat helpful book (Wing's, at less than 200 pages), parents new to the autism world can start their journey off with much better guides. Lyons, a father to a daughter on the spectrum, authors the girls' guide, and Ken Siri, father to a son on the spectrum, authors the boys' guide. Both books are weighty and choreographed to provide the same information in an orderly, logical layout that will set the path for parents just starting out. There are, even for those of us who've been navigating this terrain for half our lives, some interesting insights and a neat consolidation of information that will make this worth pulling off the shelves to find a quick tidbit of information.


These are practical guides, filled with the kinds of information that would have come in handy twenty years ago. I look forward to seeing how these guides grow in future editions.


Ken Siri, author of 1,001 Tips for the Parents of Autistic Boys, was kind enough to answer questions I posed as I read through the guides (I will be doing a more thorough reading in the future, but was able to look through the guides and read about a third of the books in preparation for this post).


Q. What do the 1,001 Tips books have specifically to offer parents of children on the spectrum who’ve been living with the diagnosis for some time? Many old-timers, so to speak, have spent years, even decades, reading the relevant literature. Will this be worth their time or do you think these books are better geared to parents new to the diagnosis and the autism world?


I think that more people dealing with this have less information rather than more.  I think the population of people dealing with autism is often not up to par with other folks in terms of information, especially people who write blogs and books, etc.  I think a large part of the population is unaware of a lot of these things.  At least Iwas because putting this book together I learned stuff and now I think I know a little bit more.  And people contributed tips who know a lot more than me:  other parents, medical experts.  People who have more experience, they won't get out of it as much as folks who are just coming up the learning curve but they will get something out of it. 


I've been going through the book, flipping through it, noting things.  I've actually gotten a couple more things out of it even though I put the whole thing together!


My answer to this question would be that I think as you learn, more and more, each incremental piece of knowledge is going to be harder to acquire.  For people who have read dozens of books and have been dealing with autism more, there's certainly going to be less new information for them than people at the opposite end of that spectrum.  But even if a couple of tips help to improve their lives, I think it's worth the investment of time to read it.  It's simlar, I think, to the Cutting Edge Therapies for Autism book I wrote with Tony.  There are a lot of parents I know who know a lot more about it and they were still coming up to me and saying, “Hey, I didnt know this!  I didn't know that!” 


Q: Tip 7 in both books really struck me; it appears to be a quote from Autism: A Holistic Approach: “For an autistic child already in the first sensory motor phase, the individual relationship with a key person, usually the mother, fails to appear, and the child’s attention is directed mainly towards the spatial world.”


With no clarification of the quote, there’s no context for it. It seems to hearken back to Bettelheim and refrigerator mothers. While autistic children’s relationships with others may look different and feel different for the parent from what is typical and expected, it’s not true that these relationships don’t exist. Was there a particular reason behind the quote and why no context is offered?


What we were looking for in this initial chapter here were tips that would sort of alert people as a warning sign, a tripped wire, that maybe something's off and maybe they should do something about it, start investigating, talking to other parnets, something.  My hope for this chapter is if someone was worried about their child's behavior, going through these tips might encourage them to take action sooner than later.  You get much better outcomes if you take the initiative and you don't wait for a formal diagnosis.  The tips came from myself, Tony, the editors, folks that contributed toCutting Edge, bloggers, medical experts, individuals with autism. 


I understand why Kim pointed out that quote and after I've re-read it a few times, maybe it wasn't the best tip for this section.  But, I would hope that someone, if they were reading it, if the relationship  weren't developing with Mom or Dad the way it typically would, might be a warning sign to Mom and Dad.  I saw this quote as a flag and as a way to illustrate something that should be flagged.


Q:  The inclusion of tips in section two referring to the creativity and imagination that Asperger’s children display was refreshing. Beyond the quote from Copley, do the author’s have any information regarding researchers’ information pertaining to imagination in autistic individuals? For the most part, there’s been a portrayal of autistic individuals as having a lack of imaginary play. It is only through the voices of autistic individuals themselves that their creativity and imagination has become apparent and acknowledged within the community. Were autistic individuals’ voices considered when putting the tips together?


Alex is on the opposite end of Asperger's because he's non-verbal so this is actually not my expertise. There was an enormous weight of information and we did make an effort to find expert contributors as well as all as other parents that we talked to and solicited tips from.  This tip was researched by someone with a child with Asperger's. 

As to imaginary play, in my experience, Alex doesn't really play with toys, per se.  He likes to engage in physical play a lot.  Like, right now, they just went to go play on the swings and climb and stuff but he doesn't exhibit a lot of imaginary play.  I do know in school they worked on having a stuffed dinosaur and he laughs and thinks it's funny and I'd like to think that indicates capability of imaginary play.  In Alex's case, it will take more work to ferret that out.  I think it there's but it's not displayed a lot.  If you go out of your way.  Sometimes I take out that fake dinosaur from when he was 3 (he's 12 now) and pretend to bite him.  He laughs and thinks it's funny. I don't know if it's the tickling thing or imaginary play but he likes it when the dinosaur bites him. 


For whether individuals' voices were considered, there were at least two contributors that are high functioning autistic writers.  One person actually works for DynoBox, which makes tech programs.  She's helping us with the second edition of the Cutting Edge book.  Some of the tips were from Temple Grandin, as well. 


Q: What do the authors hope parents will take away from these books?


The take away would be that there is hope.  That the earlier you get on top of things, the younger your child is, the better the outcomes are.  But even if you sought help later, for one reason or another, you can still improve the outcome.  And, the other thing is, that as a parent, you're not alone.  There's many of us, actually, dealing with this.  Other parents are your best source and they were the best source in my case for the book.  I think many parents should see what's out there, local organizations and if that's not close by, wherever their child is at school, talk to the parents there.  Meet up, get ahold of their contact information.  All parents of autistic children love to talk because not everyone in your family always wants to hear about autism and, frankly, they can't appreciate what you're going through on a daily basis like other parents who are going through what you're going through.  Not only are they your best source of information, they might also end up being your best friend and someone to talk to when you need to talk. 


Q: What surprised the authors the most as they gathered material for the books? What tips did they find the most inspiring, most beneficial, to their daily caring for their children on the spectrum?


What was surprising to me was the information.  When we first started to put this together, we were trying to get as much information as possible.  There's a lot of information out there, it's true, actually.  At the end, we wanted to make sure we had 1,001 tips but we ended up having extra.  The volume of information out there is just so huge.  I think what I took away from that is you need to spend a lot of time doing the research and any tool that would act to help narrow your focus or point you in a certain direction is helpful and I hope that's what this book does and Tony and I hope that's what ourCutting Edge book does, as well.


As to what inspired me about working on this book, was the fact that there was information in there that I've learned as I was compiling it and I was able to put that into effect with my son, Alex and it helped.  I'll give you one quick example.  Alex is on a gluten free diet with soy and other stuff and occasionally he would get constipated if he ate dairy and his ears would get red.  He would have an allergic reaction.  When he would have rice or bananas, which are things I've currently restricted, he didn't have an allergic reaction to that, so I'm like, “Rice is fine.”  And bananas, “What's not to like about bananas?!?”  But over time, and from doing research for the book, I did realize that Alex had a lot of constipation issues and even they'd improved from other changes, I realized I should probably give it a try.  So, I restricted bananas to a great effect and now Alex is more regular, including with his behaviors. 


Aloe juice is the other thing.  It basically helps with bowel movements and it's natural and it's juice and you can throw it in orange juice and I found that in some obscure medical book, literally in some pile, while researching the book. 


Those are two quick examples of what I got out of the book and I was excited to learn about this stuff.  Hopefully that will translate and other parents will come across just a few tips and say, “I didn't know that!  Let me try that out!”


*I did edit, correcting some misspellings in the transcript and added the word wants in Ken's answer in question 4 (par. 1 of his answer). Content was not changed.


Disclosure:
I received the two tips books electronically as pdfs to review for this post.