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. 

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