New Book in the Making on "Welcoming Families with Autism"

I'm excited to let you know that I'm going to be writing a new book, due out next October from Jessica Kingsley.  The title is yet to be determined, but the intent is to provide community organizations (everything from ball clubs to museums to conservatories) with the information, models, troubleshooting ideas and fundraising resources to include kids, teens and families with autism in their programs and events.

Much more on this soon - I'll be needing your help!

Why I Wrote "Get Out, Explore and Have Fun!"

Lisa Jo Rudy is a professional writer, researcher and consultant, and the mother of a 13-year-old boy with an autism spectrum disorder. Since 2006, she has been the 'About.com Guide to Autism', a part of The New York Times Company. Lisa has more than twenty years of experience in developing hands-on exhibits, interactive games, books and activities for kids with every learning style. She is passionate about creating opportunities for young people to build on their abilities, strengths and passions. Lisa has founded an inclusive summer program for children with autism in collaboration with the YMCA, written articles on inclusion for museum professionals, presented workshops on the subject, and is working toward development of related programs for the future.

Here, Lisa answers questions about her new book Get out, Explore, and Have Fun! How Families of Children with Autism or Asperger Syndrome Can Get the Most out of Community Activities.

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Q: What motivated you to write this book?

My husband and I have always worked in the non-profit world – the world of museums and zoos, science, art, theater and education. We've met people who make their livings building haunted houses, showing the night sky to children, diving under the sea and investigating the mating habits of snails. We've seen kids on and off the autism spectrum (some with significant challenges) join dinosaur digs in Montana, play first clarinet in a regional orchestra, tutor typical peers in a foreign language, show horses, sell their paintings and much more. We've read the extensive research that says people learn in many ways, and express what they know with or without the use of spoken language. We know that getting out, exploring and having fun is not only critically important to full and happy life – it's also a way to build self-discovery, personal growth and bonding into the lives of children and families living with autism. It's time to get out there and make it happen!

Q: You see getting out and exploring as an extension of learning, as well as having fun. How do autistic children learn differently when they are out and about? What lessons can educators of inclusive classrooms learn from the book?

When kids are in school, they are taught with words, tested with words, and judged on their ability to use words successfully. The problem, of course, is that kids with autism by definition have a difficult time with both making sense of and expressing themselves with words.

Fortunately, there are many, many other ways to teach, learn, and show others your abilities. You can use your eyes, ears and hands. You can sing, play music, paint or swim. You can build a model castle, create a computer program, or ride a horse. Unfortunately, schools very rarely take advantage of the million and one non-verbal techniques for teaching or learning – and of course standardized tests make it even tougher.

My hope is that this book – and many other projects I’m involved with – will help teachers, administrators, consultants and researchers to investigate and make use of techniques used in informal settings (and the research that has already been done around the success of informal education for all kinds of learners) when they plan their lessons. Could their students learn through hands-on experimentation? Through physical exploration? Through artistic creation? Could their students express their learning through theater? Music? Or engineering design? We already know that the answers to these questions is "yes" – the challenge is to ensure that kids on the autism spectrum get the opportunity to benefit from what we already know.

Q: How do family units benefit from getting out and exploring?

Autism can be an incredibly isolating disorder. Not only do parents wind up spending a huge amount of their time, energy, money and love on therapies and care – they also feel like outsiders in their own communities and families. It can be even worse for siblings who, through no fault of their own, are often excluded from ordinary activities. By getting out and getting involved in the community as it's possible, families are able to reconnect with clubs, churches and synagogues, sports leagues… and often with their own families. Another huge plus for getting out into the world with a child on the autism spectrum is that families discover their child’s real strengths and abilities in ways that would never be possible in the school or therapeutic settings.

Q: For a parent, a tantrum on the train or a punch on the playground can sour the idea of future excursions. What are your tips for recovering from a 'bad day out'?

The best way to manage a bad experience is to already know, in advance, what you’re going to do when it happens. Autism parents know that it's almost impossible to control for all possible issues, and to guarantee success. On the other hand, it's very possible indeed to have a Plan B already in place.

Instead of taking a group of kids to the playground with one adult in charge, for example, have two adults along. That way, if an incident occurs, it's easy to step in, end the experience, and leave the situation – without disrupting the group's day out. At a zoo, the best choice may be to buy a low-cost membership, so that a shortened day at the zoo feels less like a failure and more like a … short day at the zoo!

Bottom line, it will always be a challenge to involve your child with autism in typical community activities. Planning and flexibility – along with a thick skin and a sense of humor – can make all the difference.

Q: What advice would you give to a parent who want to get out and explore with their autistic child, but may have limited time or resources?

Start small and simple. If your child loves animals, visit the pet shop. If your child enjoys music, go listen to the town band for a little while. Take a short walk in the woods, plan a half-hour at the local pool, or pick some apples at the farm. Don't spend much money, don't commit a lot of time, and don't inflate your expectations. If you have a great five minutes, you're ahead of the game!

If you're really nervous about getting out in public with your autistic child, and you want to hand the reins over to someone else, you might want to consider some of many "special needs" community options that are available. True, Special Olympians are unlikely to compete at a world-class level – but the experience of building skills, friendships and self-esteem can be a stepping stone to many opportunities in the local community and beyond.

Of course, you also have the option of exploring and having fun at home – and that's an absolutely reasonable option for many families. Whether you're dancing together to your favorite CD, playing a video game, or just playing "tickle me," you’re enjoying each other's company. And that's a huge step in the right direction!

Copyright © Jessica Kingsley Publishers 2010

Get Out, Explore, and Have Fun! is a guide to what's out there, how to find it, and how to make it work for your family. The book includes hints and tips for involving your family in the right community activities, from sport to science; information on museums, arts organizations and science institutions as venues for an enjoyable and enriching day out for the family; and resources and ideas for helping your child build on their strengths, interests, and preferred learning styles to explore life in the community.

Click HERE for more info about the book.

Visit www.lisarudy.com for more info about Lisa and her work.

New Reviews of "Get Out, Explore, Have Fun" Explore the Complexity of the Autism Community

Today, new reviews of Get Out, Explore and Have Fun by blogger Kim Wombles and parent/advocate Stan Jaskiewicz (who is quoted in the book) highlight the reality that it's not always easy to find one's place in the autism community.  All too often, we are swayed by the expectations of others, or by the sometimes-ferocious politics within the autism community itself.  How do you rise above the noise to find a direction that works for you and your family?

Here's what Stan - a tireless advocate and hands-on Dad - suggests:

In my advocacy in various contexts, such as religious education or adaptive sports, I have tried to provide a consistent message to parents of children with disabilities. Don't assume your child can't do something because of his or her autism - you may have to provide accommodations, be involved yourself as a leader to facilitate your child's participation, and plan the event intensively, but your child is capable of many great things.

Kim, a dedicated autism blogger and mom, has for many years been a major voice in the autism controversies that seem to grow more heated and polarized every day.  In her review of Get Out, Explore, however, she notes that she's found more common ground than she anticipated:

...I’ve communicated more over the last year with parents whose beliefs regarding their child’s autism run the gamut and yet somehow, we’ve managed to fairly easily work together to try to advocate for others in need and to forge friendships, as well, based on the mutual desire to make the world a better place for our children. It’s refreshing and heartwarming to realize that we have common interests that rise above the questions of causation.

Read Samples from "Get Out, Explore, Have Fun!"

Curious what's inside Get Out, Explore, Have Fun?  I'm pleased to say that I've placed samples from the book on my website.  But if you want a taste right now, here's just one of the three excerpts I've posted:

Exploring Your Options (Yes, you have options!)

Today, the YMCA, Boy and Girl Scouts, museums, and an incredible range of community and private programs are very aware of the huge rise in kids with “special needs.” Fewer and fewer program directors are likely to say “We can’t help you” when you mention a developmental delay or even an autism diagnosis. And more community groups than you’d expect have actually gone out of their way to learn about and provide supports for kids with autism, ADHD, and similar developmental differences.

The problem is that too few parents, teachers, therapists, and support groups are aware of how things have changed—not only for our kids with special needs but for families overall. There’s much more openness to special needs families, if for no other reason than the fact that we now make up some 15 percent of the family market overall.

And it’s also much more acceptable than ever before for parents to take an active role in their child’s informal learning experiences. Parents hang out and take part in arts programs; they attend every athletic practice; they camp out along with their young Boy and Girl Scouts; they attend every meeting of YMCA Adventure Guides. As the parent of a child on the autism spectrum, who needs you by his side, you’re not as unusual as you may feel.

Teaching Kids with Autism: Words are Not Enough

Chances are, if you have a child on the autism spectrum, he or she learns in many different ways.  She may learn visually or aurally.  He may learn through hands-on experience, through music or through nature.  But the fact is, most kids with autism do NOT learn well through conversation, lecture, or reading aloud. 

There's a simple reason for this: autism, by definition, involves language and communication deficits.  Even people with Asperger syndrome can have a tough time interpreting the underlying meaning of words, stories and tone of voice.  People with moderate autism take a longer time than most to interpret and respond to spoken or written words, and may find it challenging indeed to make sense of implied or symbolic meaning.  Of course, people with no spoken language at all will find it nearly impossible to learn entirely through words.

Unfortunately for our kids, schools (after preschool and kindergarten) teach almost exclusively through the use of the spoken and written word.  Children with autism, when they're included in general education classrooms, must grasp teachers' directions instantly, and respond within seconds.  If they don't they're quickly left behind.  Even with an aide, kids simply can't process and respond to verbal cues as rapidly as their typically developing peers.

Fortunately for our kids, however, schools aren't the only place where our kids can learn.  In fact, throughout history, verbal skills have only been a small part of the picture.  All around the world, kids learn by watching, imitating, trying and doing.  They learn through apprenticing, modeling, and direct instruction.  Whether they're learning to care for critters, use a paintbrush, zip their pants or hammer a nail, words are only a very small part of the teaching and learning equation.

How does your child with autism learn?  Where might he find instructors who teach as he learns?  Think outside the box of school, and consider the wide world of informal education.  Might your child learn best with whole-body experiences - through athletics, dance, martial arts or tumbling?  Through hands-on experiences - through exploring a nature center, fishing off a pier, or sculpting with clay?

The world is a very big place, and the possibilities are endless.  School and word-based learning are not enough.

In the photo: Tom Cook meets Peter the Rabbit at the Greenbriar Nature Center in Sandwich, MA.  Following this class, our family became volunteers at the center.  All four of us (sometimes with friends) fed and exercised the tortoises, turtles, hedgehog, guinea pig and rabbits once a month for two years!).

Autism in the Community: Making it Work

It may sound a bit odd to call a book about autism “Get Out, Explore and Have Fun.”  After all, autism is a disorder – and for most parents, getting out and exploring is hardly the first priority.  But the fact is that, while therapies and school are important, getting out and exploring the community with your child on the autism spectrum may be even more important.

Why?

There are a few big reasons, and a thousand smaller ones.  The biggest reasons, of course, are your child; your family; and your community.

If you have a child with autism, you’re probably barraged with information about your child’s challenges…  and you’ve probably heard very little about his abilities.  But if think about it, your child with autism is being asked to learn in the world’s most difficult setting: school.  He’s asked to work with words all day long – something that’s tough for every child on the autism spectrum. 

In fact, though, we KNOW that people learn in many different ways – through their eyes, their hands, their ears…  through music, and through their whole bodies.  Plenty of researchers have done the work to prove it, and of course you already know all about non-verbal learning.  No one TALKS swimming to death – they get in the pool and work on swimming skills.  No one expects a musician to describe music – they just need to play, or sing. [This kinds of learning is called “informal education,” and there are journals of all sorts out there that document the reality that hands-on, bodies-on learning really works.

Your child with autism needs and deserves the opportunity to learn and express her abilities outside of school and outside of therapies.  Maybe she’s wonderful with animals.Maybe she’s an outstanding visual artist.  Maybe he can learn to play the piano.  You’ll never know – and neither will your child – if you spend all your time in little rooms, practicing skills, language and behavior.

In fact, your child with autism may even become a real asset to organizations in the community.  In writing my book, I’ve learned about kids on the spectrum who have become language tutors…  winning athletes… and prize winning artists.  my own son has become a solid clarinetist, and a member of the local advanced jazz band.  These aren’t just make-work opportunities :our kids on the spectrum are authentically included in real-world programs, activities and events.

And what about you and the rest of your family?  Many moms of children with autism and depressed, many marriages are stressed, and many siblings are frustrated because so much time, money and energy are spent on therapies – and on worry.  But if you’re willing to take a little time to get out and explore as a family, you may it’s not as tough to have fun together as you thought. 

Even if your child with autism can’t sit through a full-length play – yet - there’s a good chance he can enjoy a hike in the woods, an hour in the pool, or an afternoon at the beach.   And there’s an excellent chance you can enjoy those things together.

Then there’s the community.  How can the community benefit from opening the doors to your child with autism?  There’s more in it for them than a feeling of having done the right thing.  If your family decides they can enjoy the zoo together, won’t you be likely to become a member?  If you’re impressed with the zoo’s willingness to support your child, you might even be interested in giving to the annual fund.  And if the zoo decides to create a special program for kids on the spectrum, they may well be eligible for special grants.  With autism at 1:100 kids, community groups can no longer afford to keep the doors closed – and that means the YMCA, the Boy Scouts, and many other groups are already out there creating better ways to make our kids welcome.

My new book, Get Out, Explore and Have Fun is a guide to finding, creating, supporting and even funding community opportunities for your child with autism and your family as a whole.  You’ll find info, tips, and even materials to copy and share with coaches, instructors and clergy.  I’ll be honest: authentic inclusion isn’t always easy, and it’s rarely worry-free.  But when it works – and it will work – you’ll be astounded at what your child can learn, be, and do.

Brett Miller's Review of Get Out, Explore, Have Fun

Thanks, Brett Miller, for your review of an early galley of Get Out, Explore, Have Fun on "Good Reads." A short excerpt:

If you are the parent of a young - or not so young - autistic child, you should get and read this book. And give a copy to your child's teacher, their IEP case worker, the IEP team.

Life is for living, even for an autistic child, and this book reminds us why this is true and how to make it happen.

Autism Awareness Day: A Puzzle Just for Fun

Just discovered a jigsaw-puzzle-making website. A perfect match for autism awareness!

Live Speaking Engagements: Get Out, Explore, Have Fun

I'm starting to set up speaking engagements to support the launch of "Get Out, Explore, Have Fun!" 

So far, I have three planned:

• May 21 Acton MA Childrens Museum
• June 2 Cape Cod Childrens Museum
• July 8 Autism Society of America conference in Dallas

Of course, I'll provide more detailed information on each of these events as they get closer.  Meanwhile, though, if you're interested in having me speak - in person or for a podcast, radio or TV - please get in touch!  This blog (and my Autism at About.com website) should give you a good idea of who I am, and the topics I can address.

Passion or Perseveration?

"Building on your child's passions" sounds like a wonderful idea.  Why not teach a train-loving child using books about trains, train-related math, history of trains, drawing trains, train music, and so forth?  Why not visit train museums, take rides on trains, practice social skills in train stations?

All of these ideas are terrific - provided your child's interest in trains (or legos or Pokeman or football stats or anything else) is truly a passion and not simply a perseveration.

What's the difference?

A person with a passion is interested in their subject.  They want to know all there is to know about, say, baseball or astronomy or legos or Manga.  A person who is passionate about trains may specialize in collecting N-gauge historic engines - but that same person will likely want to visit a local garden layout...  experience a ride on narrow gauge railway...  take in a train museum...  explore Grand Central Station.  The passion is a sort of portal into a whole world of possibilities related to the topic of interest.

A person with a perseveration simply wants to have the same train-related experience over and over again.  The interest is not in trains, but in repetition and familiarity.  Thus, a child with a Thomas the Tank Engine perseveration may be willing go to a train museum where Thomas will appear, but he's there for just one reason: Thomas.  He is unlikely to engage with the museum or the other trains, and even less likely to engage with the people at the museum.  In fact, he may have a very tough time indeed waiting for his turn to ride on Thomas - and an even tougher time leaving the ride.

Is it a good idea to support a perseverative interest?

The answer to that question is very personal.  From my own experience, I can say that supporting a perseverative interest in a limited fashion has been helpful - because even limited play is better than no play, and even limited exploration of the wide world is better than none. 

And I have found that, over time, perseverative interests can and do expand.  For example, where once Tom was interested only in collecting, piling and fingering legos, today he builds entire lego world and creates elaborate lego-based stories.  He's made his own purchases in lego stores, used his own library card to borrow lego books, and has begun to collaborate on lego creations with other kids.

On the other hand, I've heard from parents and therapists who feel that perseverations are simply distracting - and serve no really meaningful purpose.  And many people have found it best to set aside the perseverative object or topic for at least some period of time.

What's your experience with passions and perseverations?

First Review of Get Out, Explore, Have Fun

It will be months before the book comes out, but because Jessica Kingsley Publishing has already sent out galley copies, the first review is in.  Autism blogger "Whitterer on Autism" offers a really positive response to the book - highlighting its practicality and positive perspective:

Sometimes you read the title of a book and cringe inside – ‘great concept but how exactly am I supposed to do that?’ Lisa Jo fails to give me a glib reply – no, ‘how to fix it quick’ response, which is precisely why this book is readable, helpful and practical.

Lisa Jo gives us an in-depth and well considered approach to help us change how we think about some of the difficulties we face when it comes to ‘getting out and about.’ Her ‘no nonsense’ approach is refreshing and I particularly warmed to the underlying philosophy – yes all autistic children need education and some need therapy, but not to the exclusion of everything else that life has to offer....

Are you a blogger interested in reviewing the book before it hits bookstands?  If so, let me know and I'll try to get you a copy ASAP!