Sorry Folks. It's Hard and It Takes Time.

Occupational Therapy is one of the least explained and most heavily mined areas of autism intervention. I don't mean the kind of mining that involves digging for precious metals. I mean the kind that involves stepping carefully to avoid well-concealed explosive devices. 

When it comes to occupational therapy for sensory dysfunction, the right provider will motivate a child to participate as well as being a philosophical match for the adults. Both aspects affect treatment. If you are looking for a provider, issues to explore include: 
• Does the therapist have experience with sensory dysfunction? 
• Do they connect as your child's "type" (A big and silly personality? Or a reserved and composed manner?)
• Are they aligned with your family's intervention style?

Ask therapists if you can visit their facility. You are looking for clinic space that is inviting and  well-stocked, with attention paid to safety. It is best if they have some equipment that you don't have at home. That will add a special dimension to your child's sessions. 

But all of that said, setting parental expectations appropriately is where many OTs fall down on the job. I suppose they look into the tired and hopeful eyes of parents and skew toward optimism. So let me offer some straight talk: Expecting any occupational therapist to produce dramatic results in an hour (or even two) a week with a sensory-seeking child on the spectrum is destined to disappoint. But you can develop a therapeutic relationship that leads to solid results over time. 

Using occupational therapy to address sensory dysfunction is a fairly new area and it lends itself to all kinds of voodoo. Let's face it, the whole notion of delivering sensations that our children are already seeking (and in disproportionate amounts) as therapy involves a certain mind shift. There is little in the way of strong science to back specific techniques, and it has attracted little mainstream medical attention. And there are a wide variety of dubious approaches that can't possibly deliver what they promise when logic and the light of day are thrown on them. But that doesn't stop some clinicians from suggesting them to parents who are vulnerable and frustrated by a lack of visible progress. I have been pointed toward more garbage in the name of OT than in any other category since my son's diagnosis nearly a decade ago. 

Here's the cold reality: Therapy for sensory dysfunction exists whereever you can find it. It isn't just in clinics, and therapist certification matters less than consistency and patience.  

OTs who address sensory dysfunction are best appreciated for what they can teach Moms and Dads as opposed to what they can accomplish directly in a limited amount of time. Because when a child has big-time sensory issues (and in the absence of factors like pain or a concurrent condition), amelioration lies in the repeated, consistent, and regular delivery of sensory input during the business of real life. There is no Big Fix. It is a process that emerges out of trial and error about what works, as well as an exploration of timing and delivery methods. Further work is involved building simple, transparent integration so input can happen across environments, at school and at home. 

There are good OTs and they can be helpful. But assurances that come with therapy have to be consumed with a grain of salt. A therapist can't do much to address a truly pervasive issue within an hour a week, even though your insurance company or school district may say this is all that's required. OT work is going to be aided by realistic expectations. But my experience has been that providers rarely communicate the attitude to parents that their role is advisory first and direct second. 

I have two other bits of practical advice when it comes to sensory integration therapy, and the first is swim, swim, swim. Warm water swimming is especially terrific, since it neutralizes the sometimes big punch of a cool water temperature. (After all, we humans regularly run around at 98.6 degrees.) But at this time of year, there are good pool experiences available all over. Swimming is unmatched for the inroads it makes not only sensory but gross motor, motor planning, and engagement areas. In other words, it is the whole package. I have never found another single activity that is as powerful. And get in the water with your child! If you enjoy it too, it will take off. 

Second, see if you can find an opportunity to try a big trampoline with safety net sides. Mini trampolines are not the same. Big tramps are like bouncing in a bowl of elasticated marshmallow fluff as opposed to bobbing on top of a hard red rubber ball. We made true gains in my son's ability to jump using two feet together and in regulation using a big tramp, and we had crazy fun doing it. 

I began to truly appreciate occupational therapy when I looked upon it as a chance to explore and evaluate how we were doing in our real world work. In retrospect, I resent the time wasted on fantasies masquerading as goals and urging toward fringe approaches. If a therapist starts pushing you toward expensive alternative therapy in addition to what they offer, and especially if they shut down when you explain that the approach is not something you want to pursue, it's time to look for a therapist who is a better fit.

When a child is deeply compelled by a neural need to seek sensation, true traction comes from lots of consistent daily input and a long term view. You keep at it. And you surround yourself with a team that understands this a process that will continue and change over time. There is no shortage of people who can promise quick fixes, miracle dietary supplements, or other approaches best suited to draining your wallet. Don't let those things derail you from helping your child find coping techniques. It is far less sexy but it is the real work of sensory integration therapy. 

Do We Have to Call Everybody George?

For the most part, you name a problem in order to get help. After all, if you don’t need help with it, why name it at all?

I don’t need a diagnosis of “Forceful Personality Disorder” if my assertive qualities are something that make me different or unique. But I do need a diagnosis if my assertiveness is impairing my life and my ability to function. In that case, having a diagnosis can help me to get medical or psychological treatment. And it might help the people who know me make allowances when I am a pushy bitch.

In the medical world, what you call it impacts how it is treated, of course. You don’t cast a painful leg that is affected by arthritis, but you do cast one that is painful because it is broken.

But what happens when diagnosis words get amorphous and elastic? When the words applied mean something different to each person who hears them? The answer is that treatment becomes fragmented and overly affected by opinion. Public response becomes not accommodation, but confusion.

Take Diabetes, for example. A person who has Diabetes may have Type 1 or Type 2. In the majority of cases (but not all), Type 2 is a condition that is affected by and can even be induced by lifestyle factors. Improved diet and regular exercise make a huge difference in outcome. It is a disease that may have genetic components, but it also involves self-determination.

Type 1 on the other hand, is an autoimmune disease characterized by a complete shutdown of the body’s pancreas. Things like diet and exercise play no role in its onset and are only variables in its treatment.

But we call both of these conditions Diabetes because when reduced, both are related to the way a body uses insulin. In Type 2, insulin is used ineffectively and may need to be supplemented. In Type 1, insulin is not present and must be externally administered every day.

People with Type 1 endure constant misunderstandings that go along with media attention to and prevalence of Type 2. They are questioned about their diet and they endure a variety of attitudes that are tinged with “if only you had taken better care of yourself or your Momma fed you right.”

Some Diabetics believe there should be a different name for Type 1 because the confusion causes unnecessary bias and hurt. But it won’t happen. For one thing, it’s easier to raise money for a disease that affects more people. The bigger the affected pool, the bigger the footprint in public consciousness when it comes to searching for treatments and a cure.

How about Autism? (Ah, you knew I was going to go there, right?) If you have a disorder that impairs your ability to get along well with others and read social cues, you are said to have an Autism Spectrum Disorder. (And soon the term “Aspergers,” which has been the term for a unique and milder form of the disorder, will be stricken from the DSM.) So highly verbal, sometimes hyper-intelligent and quirky sorts of people will be labeled with the same disorder as (for example) a child who is cognitively delayed but can speak and go to school with one-on-one support. And both of those kids are given with the same diagnosis as the child or adult who is unable to speak, in diapers, inclined to hurt himself or others, unaware of safety concerns, and in need of long-term assistive care. There are no accepted terms to distinguish the degrees. 

The answer to the question of how this can be is: “It’s a spectrum.” But that fails to convince. Because quite simply, human society does not apply labels with the kind of elasticity this requires. The community is misunderstanding its own members, failing in advocacy efforts, and even failing in respectful discourse. The medical world is poorly diagnosing and even making up new names of their own (haven’t we all heard the term “HFA” or high-functioning autism overused in attempts to create distinction?) And the public is just plain confused about what it means when someone says a person has autism. This all happens because the right terminology doesn’t exist.

Is it healthy for a person who has what amounts to a learning disability to be given the same diagnosis as a person who has a pervasive, life-altering disability? The outcome of giving the same name to such vastly different problems is that both suffer for it. The person struggling under the dimensions of a disorder that affects but does not greatly impair has trouble achieving appropriately-sized accommodations. And the child or adult who needs more than accommodation, who needs care, struggles to get that too.

When a disease or disorder is progressive, the spectrum concept can be effective. Each stage may be different, but one leads to another. But autism does not have stages that lead to each other, quite the opposite. A person who is mildly affected becomes better and better able to handle the issues with maturity. And while a more seriously affected person will also progress, often new issues emerge with maturity to complicate. So the gap widens.

But as with the two distinct forms of Diabetes, with Autism, all must fly under the same flag, and for some of the same reasons. The larger the size of the affected group, the more priority it can receive. New names mean smaller buckets, smaller buckets mean less money. 

What is in a name? Plenty. If only we had them. As it stands, we are like George Foreman’s family. Every child is named George and when you intend to call out one in particular, everyone jumps.

"How Old are You?"

Every year, birthdays get better for my son. They've changed from being completely strange and incomprehensible events to fun days which promise happiness amid familiar rituals.

Birthdays also hold a learning challenge, one that lives in the age-old question asked of all kids: "How old are you?" Every year we need to relearn the answer.

The learning has become part of a tradition that we all love. We make little movies, and (thank you, Apple) the tools are getting easier and easier to use. My son watches them all year long. Looking back at the old videos is a quick catalog of growth and fun.

This year, my son turned eleven. So we showed him how to answer the question with all the love we could squeeze in there. Happy Birthday, Drew!

View Birthday Video on YouTube

Autism in Sin City

This past week, my kids were on Spring Break from school. That means a respite from the daily drudgery of having all three of my kids in school -- instead they'll be home with me looking for fulfillment. O, joy!


Rather than fall victim to the boredom and the disasters that go with it, we planned our first trip to Las Vegas. Even though I've lived in California for more years than I feel like counting, I had never been there. 


But now I have three kids and my eldest is most at home inside a moving vehicle or immersed in a body of water. I thought a road trip to visit some of the west's most extravagant swimming pools would be right up our alley. And it was! We had a great time. 


In case anyone is considering such a trip, I thought I'd bang out what we learned. 


1. Plan your trip so you are in Las Vegas between a Sunday and a Wednesday. The rates for hotel rooms more than doubled on Thursday and they stay high until the bleary gamblers awaken on Sunday morning. Then they plummet again. Take advantage of the off-time and you will not only pay less, but you'll meet with fewer crowds and less competition for resources. 


2. If your drive is eight hours or longer, consider spending the night at a halfway point. For us, that was lovely downtown Bakersfield, where we found a Suite hotel for a super-reasonable price. It wasn't the Ritz, but it had every convenience (in-room fridge and microwave, indoor pool, heated hot tub, free breakfast). Even though our family could have handled the trip in one day, we've learned that doing it that way means Mom and Dad are zonked and the kids are cranky. Since we had a whole week on our hands and didn't want to arrive in Vegas until Sunday, Saturday night in Bakersfield worked out just fine. 


3.  There is a good article here about 10 great swimming pools in Las Vegas. If, like us, swimming pools are your angle, take a look. We chose two hotels (The Bellagio and Mandalay Bay) and we split our time between the two so we could try them both. Here's the upshot. 


- The Bellagio is more sophisticated and quiet. There was a sedate and polite crowd by the pool, and all were tolerant and even indulgent of my children, who were overall well-behaved. They have a hot tub which is perhaps the largest I've ever seen and the temperature was perfect. This was the main attraction for my son, who spent most of his time there (in between visits to the large pool for contrast). Even in the off-season, the hotel keeps the regular pool heated to 82 degrees. (I called to find out before booking our stay, since a chilly pool is the kiss of death to a good time for us.) 


One thing to note with the Bellagio is that getting to your rooms involves a long walk through the casino. It seems unavoidable. We have a wheelchair for our son, so we took a brisk pace right on through to our elevator. The first few times he was boggled -- it was a lot of stimulation and lights and noise and smoke -- but after he got through the gauntlet once or twice he saw its limits and he was able to cope, even look around. 


- Mandalay Bay is more of a thrill, with a wave pool, a lazy river, and a total "beach" atmosphere. The crowd was younger, the chairs filled. Popular music played over the loudspeakers. Lots of kids. Your child must be 48" tall to go in the wave pool, and there were a few disappointed youngsters watching an elder sibling jump in (including one of my girls) but the restriction was reasonably applied and the lifeguards were kind about it. Since the lazy river flowed a few feet away, consolation was at hand and ample. Did I mention that there were TONS of lifeguards on duty? I cannot leave my son unattended for fear he might stray, but if your child can be counted on to stay nearby, water safety is in good hands. The wave pool alone had four guards on duty. They heat their pools to 85 in the cooler season. 


In spite of its younger, hipper vibe, the interior of the Mandalay Bay hotel was less stimulating and less difficult than Bellagio. The lobby was not terribly crowded there and we were able to go straight to our elevator without going through casino acreage. We appreciated that!


We liked both these hotels for their different characters and we were glad we didn't spend our whole visit at either one. The frenetic quality of Mandalay was exciting and fun, but it was also a more jacked-up feeling than Bellagio, which was a relaxing respite zone. 


4. At all Vegas hotels, I highly recommend (if possible) that one adult stay in the car and another go in to handle the check in process. We found it took 20+ minutes to get things squared away and if your child likes waiting as much as mine (ha), the best move is to let one driver do some laps while you check in. You can text the room number when you have it and go from there.  


5. At the top of the Bellagio there is a free tram which runs back and forth constantly. My kids loved this and we rode it back and forth to a nearby mall several times. 


6. Be prepared (especially at Bellagio) to find that a la carte eating is just about impossible. You will not find even a coffee maker in your room -- the push is on for you to order from room service or eat in the chichi hotel restaurants. Room service was seriously pricey and chichi is out of the question for us. Eventually we discovered a cafe where we could take away sandwiches (still very expensive), or we could ride the tram to a food court populated with familiar stand-bys (McDs, Pizza, Panda Inn, Starbucks). But the hotel won't guide you there because they want to feed you themselves. 


Don't hesitate to pack a bag with some backup food if you can. But if you want a microwave you will need to stay in a different kind of hotel. The Suite places exist near the strip but they will not have the killer pools of these big ticket places. We requested an empty fridge in our room for medical use and they gladly accommodated us at both hotels. You'll find that all the rooms have already-full fridges with mini-bar prices. If you pick anything up off it's weighted place, you'll get charged for it. 


7. There is a lot to do in Las Vegas, from arcades to roller coasters to lavish shows. The idea of it will seem tempting or overwhelming depending on your family. But start with what you know works for your set. You don't have to try everything. If you know swimming is your bag as we did, you don't "have to" sit through a Cirque du Soleil. If there are things that tempt you, schedule them in and give it a try. But don't spend so much money that you'll feel angry or upset if your child gets overwhelmed and you need to leave. 


8. Last lesson learned the hard way: Don't keep your room key in the same pocket as your cell phone! That erases the magnetization and you are locked out with all the hassle that implies. 


We came and went from Las Vegas without betting a single chip or taking in any show. No problem. We left feeling exultant -- we had a great break. We're home again and it's a hop, skip, and a jump to school on Monday and we made it! 

Riding the Tram

Coasting the Lazy River (Mandalay Bay)

Beautiful drive all the way

Susan Walton is the author of Coloring Outside Autism's Lines, a practical book about ways to have fun at home, with friends, in the community, during holidays and on vacation. It also gives practical advice to friends and family about being part of the fun. On sale now at Amazon and wherever books are sold.

Visit Amazon.com to learn more

Aware of What, Exactly?

Often when I tell someone that my son has autism, they tell me a story. They tell me the story of who they’ve met (or heard of) who has autism. I understand -- they are sharing their experience, and their experience may be limited.

That’s why the story they tell is always about a person with unusual skills or abilities who has triumphed. Sometimes, lately, they speak of Temple Grandin and the movie about her on HBO or James Durbin, the American idol contestant who sings like a house on fire.

These recountings remind me of rags-to-riches mythologies. Everyone knows tales of lucky people whose gifts and hard work took them out of the ghetto. But for the majority of people who are struggling with poverty, that is not going to happen. Careers like basketball stardom or making pop music are not real options.

When “Autism Awareness Month” became the talk of the town, I asked myself, "What do I want people to be aware of?" And my thinking returned again and again to these well-meant, supposedly inspirational stories. I want people who may never be personally touched by autism to understand: It isn’t about savant skills and prodigious talent. It is far less romantic.

My son will not play concert piano, and he will not be a math prodigy. He cannot paint great art and he cannot remember dates and train schedules to the amazement of all. And the truth is, after almost 10 years of autism awareness, running a parent group, and working as an advocate and an author, I've never met that kind of child with autism. The hundreds of children I meet have much more in common with my son than these media-friendly whiz kids. Gifts like that are terribly rare. 


I don't think about whether or not my son will go to college (although some children with autism may). I hope he will find kindness throughout his life. I hope we can find meaningful work for him, and I hope he will have a safe place to live. I hope my daughters won't feel burdened or unable to help him because they will be called upon to do that during their adulthood. And I hope that their children, my grandchildren, are not born with autism, even though 1 in every 110 children are, and the number is growing.

As a problem that exists on a spectrum, autism causes a variety of outcomes that all fly under the same flag. But the notion that children at any level of impairment will outgrow or overcome autism is one of the most persistent and problematic fairy tales going. The reality is that many, many of our kids have and will always have a serious form of autism. It will affect every single moment of their day, it will never quit. The impact is big and immovable. There is no known medicine, diet, therapy, or love that can change that.

That’s why awareness is important. So that people behave kindly when they encounter fellow citizens who are affected by autism or help financially where they can. 

I admire my son every day, because I know that if I had to carry his load I might be cranky, mean, or mad. But he is not. He is unfailingly sweet, full of fun, and ready to try anything because he loves adventure and trusts his parents to keep him safe.

God willing, I'll live to my own Grandmother's age of 103 to keep doing just that.

  

About the Author:

Susan Walton is the author of "Coloring Outside Autism's Lines," published by SourceBooks, Inc., which encourages families to embrace and enjoy life when a family member is affected by autism. She is the parent of an adventure-prone child with autism as well as a set of twins who are not far behind when it comes to searching for fun. She runs the Peninsula Parents of Special Needs Kids group in Northern California and is on the Board of the Best Day Foundation, an organization that provides outdoor adventures like surfing and snowplay to kids with special needs. 

How to be a Friend to an Autism Mom

It can be hard for friends (or extended family) whose children do not have autism to relate to Moms of children who do. "What is the right thing to say? How can I be a friend? I seem to say the wrong thing all the time!"

No one wants to leave you out in the cold, wondering what to say, facing a prickly pear of a pal who may even be immersed in a minor depression of her own. 

Take the following advice and you should be fine. 

DO NOT offer pity. 

Nothing makes a girlfriend want to run off and take a shower (and then stay far, far away from the source of the filth) like genuine, heartfelt pity. 

"You poor thing, I feel bad worrying about my (plumbing problems, child's broken wrist, difficulties at work) when I think of you!" 

Of course your friend has it rough. But pointing that out and covering her in "You have it so much worse than me" slime only serves to rub it in. 

DO NOT attempt to provide inspiration. 

Don't tell her about the person you read about in the paper who performs on the piano or the family whose child is "completely recovered." Whether it is savantism or cure (or any other amazing gift of good luck), the reality is that most people with autism will not develop skills that allow them to "triumph" over their challenges, and recovery is as unlikely as lightening. Try to imagine telling your friend whose house just went into foreclosure about the woman in the paper who won the lottery. Would that help? 

For every instance of those rare things happening, there is a reporter waiting to rave about it and a further five people sending the article to your friend. You don't need to be one of them. She may be struggling with her child's potty training, sleeping problems, lack of speech, intense unhappiness or daily living skills. Her child might grow up to be challenged to play the radio for an audience without driving them crazy by changing the station every three seconds. Trust me when I say that she will not feel inspired by the teenager with autism who plays concert piano. 

DO NOT give advice. 

If the parent of a child with autism is in the market for information, there is a great deal to be had. Most of it is garbage. You may read about secretin, chelation, elimination diets, or lyme disease. And there is credible information like new research underway. But assume that your friend has access to the information that you have access to, because she does. Forcing her to express gratitude for the exciting news that a new snake oil has arrived on the scene, or having to debunk it for the benefit of someone who doesn't really need it anyway is trying. Instead, be her respite from that part of her life. 

DO (Please, please do) offer kindness and solidarity. 

You may not know what this hardship feels like, but presumably you know what some hardship feels like. You want to strike a chord of "I know I can't truly understand this, but I'm behind you all the way. You go, girl!" 

DO (Please, please do) listen. 

Tune in and find things to ask questions about as if you are paying attention. "Last time we talked you were working really hard on getting insurance to come across. Any luck?"

DO (Please, please do) stay put as a friend.

Maybe your kids don't really like playing with her kids, but you can make them. Really, you can. You can insist. Eventually they will either find that they are enjoying it more than they thought they would, or it will be over. It is good for your kids to learn kindness and patience. It is good for her kids to play with your kids who don't have autism. But only you can make it happen.  

DO (Please, please do) be patient. 

It is entirely possible that your friendship will seem different, especially during the early years after a diagnosis. Maybe all her new friends have kids with autism and you feel weird, out of place. Maybe she has a tendency to cry over coffee. Work through it. She needs you. And someday, when you need to find a specialist for your child, you will call her first because she is so darn plugged-in to the local medical community and you can trust any recommendation she makes. 

Susan Walton is the author of Coloring Outside Autism's Lines, published by Sourcebooks.Coloring Outside Autism's Lines is a practical book about ways to have fun at home, with friends, in the community, during holidays and on vacation. It also gives practical advice to friends and family about being part of the fun. On sale now at Amazon and wherever books are sold.

Visit Amazon.com to learn more

An Open Letter to Preschool Directors

All too often, parents come away from encounters with their child's preschool teacher struggling with confusion, self-blame and fear. While there is no getting around the pain that goes with the discovery that a child is struggling in school and may have lifelong challenges, there is no need for it to be as awful as it so often is. So I've written to the people I believe have the power to make a difference. 


Dear Preschool Director, 

I know that running a school for children between the ages of 2 and 5 is challenging. It is a business filled with both the fulfilment of seeing children set on a path to learning as well as the heartbreak of discovering lifelong challenges. (With a lot of noise in between.) I'd like to raise a topic that is connected to the more difficult part of the work that you do.  

Your teachers are on the front line of a force that is increasingly besieged. The kinds of challenges that emerge in children during the preschool years are mounting. Your teachers are coping with more than ever before. It is imperative that they be given the tools they need to cope not only in the classroom but outside the classroom, in speaking with parents. Because it is not a question of whether or not a preschool teacher will face such a difficult conversation at some point. As we both know, it is inevitable that your teachers will arrive at a time when they must talk to a parent about challenges, potentially life-changing challenges, that were first spotted in their classroom. 

Your teachers mean well. They want to share what they've learned about a child and offer resources to help. But all too often, frustration and personal feelings are brought to bear on a conversation which requires careful handling. To be frank, I have heard tales of blame, name-calling and conflict. I'll bet you've heard some doozies too. And even when the conversation goes smoothly, parents must sometimes find their way through a maze of recommendations that include alternative therapies, dietary ideas, or parenting wisdom. 

I urge you to gather your teachers for an after-hours training session. At that session, make clear who is authorized to initiate such a conversation (senior teachers only if possible) and guide them through a conversation with the parent of a challenged child. Give them the language and the attitude they need to conduct such a conversation with kindness. Be sure to include:

1. Guidelines about how and when to hold such a discussion. It should not be done unexpectedly or during the chaotic and harried time around drop-off and pick-up. It is a conversation that requires a reserved time either in person or on the phone. 

2. Discuss the language that is appropriate to use in speaking of classroom challenges and the kinds of strategies that have been tried (successfully or not). Make sure teachers understand that delivering a laundry list of ways the child disobeys and annoys will not have the desired effect. Conversations should be focused on the child's difficulties and frustrations -- not the teacher's. 

3. Give teachers a resource sheet with the school's name at the top. List several reputable child psychologists in the area who can do a skilled and neutral psychological evaluation and deliver a written report. Preferably these doctors will be in practices that accept insurance. Explain to your teachers that regardless of their outside contacts or previous experience, only the resource sheet from the office should be given to parents. You can solicit their input about who might be included and vet their recommendations privately. Please don't put your parents at the mercy of Betty's cousin's beloved naturopath. 

4. Role play, role play, role play! Make sure each of your teachers is given the opportunity to practice a conversation with a parent about a child with challenges. Pretend the cultural, emotional, language and financial barriers that are likely to emerge in your particular area. Throw curve balls and help them avoid confrontations. Coach, guide, and teach your teachers how to traverse this minefield. The goal is ALWAYS to help the parent see that outside intervention is appropriate now. The goal is NEVER to convince them to move their child elsewhere because he is driving you crazy. 

Your teachers are already under tremendous pressure to manage full classrooms, financial shortages, and difficult behaviors. I know that asking more of them and of you is no small matter. But ultimately, this kind of training will lead to calmer, more effective conferences with parents and better follow through for children. Your students will get the help they need to be set on the right path for the future. Isn't that why you and your teachers went into the field? 

Thank you for all that you do. 

The Autism Parent Community


Susan Walton is a different kind of autism mom. She tried the diets, the therapy, and even dabbled in some of the voodoo, but ultimately found it wasn't going to take her family where they wanted to go. Instead she dedicated herself to finding adventure along with many other Northern California families in the group Peninsula Parents of Special Needs Kids. Whether she and her kids are swinging from a zipline, surfing in an ocean, or ducking behind a couch, it's all about fun and she wants to spread the word: Life is not over after diagnosis. The adventure is just beginning and you don't need to stay inside the lines. 

Learn More about her book at Amazon.com

He's a Wanderer

Recently, the ICD-9 committee began considering a code for wandering, which is a serious problem in not only the autism community but among Alzheimer's patients as well. But the issue of whether wandering should be considered a medical condition has emerged as a controversy.

The opposition to such an insurance code comes from adult autism advocates who say that the act of wandering has not been established as a medical issue, and that if it is designated as one, it could prevent caregivers from considering wandering as an act of communication -- one that is intended to reveal abuse or negative living conditions. 

I disagree. And I've found it difficult to apply the objections in this controversy to the wanderers I know. Allow me introduce you to my own wanderer: my ten year old son. He is brimming with energy and he craves adventure. His appetite (or his need) for motion, stimulation, and activity is unending. We embrace these wonderful qualities because he spurs our family into trying more, going new places and undertaking activities that we never imagined trying.

But we get tired!

The last time my son managed to jimmy open a window and seek his own adventure, I was asleep on the couch after a day running after him on the beach. I thought all the exits were secure. But his hunger for more stimulation spurred him on. His brain and his body feel that being in motion is the way to feel "right." Being confined indoors, no matter how large the space or whether it contains swings, trampolines, and the like can feel confining in a way that he hates.

And so begins the story of the sickly-familiar but frantic neighborhood search, the eventual townsperson who calls the police, my shocked drive to pick up my son. I find him barefoot and a bit cross at being stopped in his tracks, but pleased nevertheless with the excitement in the air. He's at a stranger's house a mile from home. Several police cars are on the scene with their lights flashing. And what does my son say when he sees me? Forget "Hi Mom." He blurts, "No home!"

I understood. He didn't want to go home because he thinks it is too static there. He's used to that old place and it holds no thrills. But I must worry that the policemen will think my ten year old is communicating about abuse. And all of this excitement, attention, and adventure is big fun for him. He has been utterly (but unintentionally) rewarded in this impulsive and hazardous act. He isn't unhappy or unloved. He just needs excitement and lots of it.

We invest in door locks and we learn how to install them backwards (so that you need a key to get out of the house). We must install them ourselves because no locksmith will do it. (They are afraid of fire code violation.) We nail our windows shut with the knowledge that we must live with that danger to prevent another. We've gotten estimates for alarm systems that would do a much better job at protecting our perimeter than the Christmas bells I buy in quantity and dangle on every knob. Do I wish I had professional advice and financial help in this ever-escalating game of The Great Escape? You bet I do. 

Today, wandering prevention is concocted behind closed (and tightly locked) doors. It would be far more sensible to bring this problem into the light so families can be assisted into smart, compassionate, and effective choices. We need to end the era of using hammer and nails on doors and windows out of fear and isolation. 

The IAN (Interactive Autism Network) has started a survey to collect data about wandering (also called elopment). All parents of children with autism (whether they wander or not) can help by participating.  Here's the link:

http://www.iancommunity.org/cs/ian_research/elopement_and_wandering_questionnaire


Susan Walton is the author of Coloring Outside Autism's Lines, published by Sourcebooks. Coloring Outside Autism's Lines is a practical book about ways to have fun at home, with friends, in the community, during holidays and on vacation. It is also about embracing a way of life that highlights good times. Susan promises no cures, points to no culprits, and trumpets no inspirational miracles. She offers parents a path to making their family's life as happy and as filled with fun as possible. On sale now at Amazon and wherever books are sold.

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