Susan's Blog

Friday, July 27, 2012

Scarborough (Un)Fair

A song I wrote about Joe Scarborough, who thought to link a horrible twisted act of James Holmes to autism.

Sung to the tune of Simon & Garfunkel’s “Scarborough Fair.”

Are you listen’in to Scarb’rough on air?
He’s no sage on AutisticKind
Remember he’s mean and unfair
Got no right to autism malign.

Tell him to shove it with a sickle of leather
He’s no sage on AuttisticKind
And switch his job to reporting on weather
Then he’ll be much less of a swine.

Tell him to find me some proof on his stand

He’s no sage on AutisticKind

Away from the quacks and ignorant fans

Far away from Bettelheim.

Wednesday, July 25, 2012

Real Lives Require Realistic Laws, Policies, and Attitudes

Talk show host Joe Scarborough may have issued a so-so apology to the autism community for his unsubstantiated, offensive remarks trying to tie the  Colorado Tragedy to the Autism Spectrum, but to me the real news is that we here in Massachusetts have the opportunity to do some actual work towards improving the lives of those with ASD. “Work towards improving…” are not interesting words to get you worked into a lather, and neither are “call your state rep,” but those are words that actually matter. It’s one thing to sit in a comfy chair in front of a camera and millions of similarly sedentary viewers and whip people into a frenzy over your own ignorant views. It’s quite another thing to be an elected official and sit down over a crappy pizza dinner on shitty creaking plastic chairs with parents who are not even your own constituents, just to learn about what specific improvements should be made in the lives of autism families. But this is what Ashland Respresentative Tom Sannicandro did Tuesday night at Advocates, Inc. in Framingham, with a bunch of fierce autism parents of adults, including Autism Housing Pathways founder Cathy Boyle, Metrowest Autism Alliance Executive Director Nannette Ohman, other ass-kickers, and me.

(Before I go any further, I will say that it is likely that none of the people at this meeting had autism, although of course trees don’t grow far from their apples, so… but I do often hear “Nothing about us without us,” so I feel the need to address this. Yes, it is true that autism adults who can advocate for themselves should always be part of meetings about autism services. But for those who cannot yet do so, their guardians, caregivers, and loved ones will do this for them. We cannot make wholesale dismissals of meetings that are “only” parents, because if the parents are doing the advocating — and to advocate well for your autistic loved one, you must stay in the closest contact with him to understand what he wants and needs — if the parents are doing the advocating, they are valid representatives. . As much as we all dearly wish that our autistic loved ones could be the people at this meeting, saying clearly what they want and need, it is not realistic. We need to listen carefully to our children and figure out their needs, and then we have to reliably convey them at meetings that cannot logistically accommodate them. We parent advocates need to listen to what autistic adults and our children say and need, and our children — and the autistic adult community — need to listen to what we have to say, too. We live with autism, too.)

Sannicandro told us he was there to learn about autism transition and adulthood for a paper he was writing; the state rep is in a program at Brandeis that is funded by the Lurie Center, all for the purpose of improving services and access for those with autism. But Sannicandro is one of those stellar leaders who wears most of his hats all at once:  state rep, student of autism, father, special needs attorney. He is a Force for the Good, make no mistake. (You can contribute to his campaign here, by the way.)  So we knew that whatever we told him was going to spread into the State House, too.

“What would you change right now to improve the lives of autism adults and their families?” Sannicandro asked us. The list was short but thick: 1) Have one clear, consistent entry point into the system, from the day of diagnosis throughout adulthood. Open up the silos. 2) The money should follow the person*, rather than where he happens to live (meaning, the Regions should not get to dictate where the client gets to live, but rather, the client’s needs should dictate this).  3) Funding should be according to functioning level and need, not label or IQ. Funding should be person-specific, not label-specific. 4) Funding should be portable, between Residential and Family Support. In other words, there should be a sliding scale of funding from Full Residential all the way to In-home Support. It should not be one or the other. Currently the system is: if you have Residential funding, you are fairly well set in terms of support money. If you don’t, you have A LOT less.  Either you are Priority One or you are NOT, and then God help you. 5) There needs to be a road map, a timeline, some kind of chart that families and school systems and DDS’s follow so that proper planning is done. By age 14, no later, Team meetings should be discussing independent living skill-building and vocational training, NO MATTER HOW “HIGH FUNCTIONING” THE STUDENT IS. I don’t care if you are autistic and you get high honors every time, if you’re college-bound; if you can’t understand how to pay bills, how to ask where the restroom is, how to cross the street safely, how to speak to people politely, etc., YOU WILL NEED SUPPORT AND THAT COSTS MONEY.  Kids should be trained almost from day one to be as SELF-SUFFICIENT AS POSSIBLE.

How can this list of needs be met? *Funding Follows the Person: The Real Lives Bill, H167 (was H984), would address some of this effectively. The principal behind Real Lives is that the supports, services, and housing should be dictated by the needs of the client, not the State. Only then can we have true self-advocacy. Or as in the case of a guy with Nat’s particular issues, self-advocacy with a parent/caregiver liaison.

Here is what the ARC of Massachusetts has to say about Real Lives:

The Real Lives Bill empowers people to make decisions that are deeply personal and central to how they live their lives.

The Real Lives Bill lets people choose where they live and who they live with. It lets them choose the people who they want in their lives and what type of relationship they want to have with them. The Real Lives Bill helps people with disabilities be a part of their communities.

Right now, many of those personal decisions for people with developmental disabilities — decisions that most other people take for granted — are determined by other people. The Real Lives Bill will allow those individuals who choose to participate in self-determination to take control over those choices. It does it in a responsible manner, giving individuals the support they need to make these difficult decisions.

The Real Lives bill makes self-determination available for all people who are receiving services through the Department of Developmental Services. It utilizes a person-centered funding model for the services they are receiving. This funding model is innovative, cost-neutral, and one that this state and the federal government is already moving towards.

The passage of the Real Lives Bill would represent a fundamental shift in how we perceive people with disabilities. It expresses a confidence in individuals with disabilities as self-advocates whose own desires and interests should be central to their plans and their lives.

We need to get our State House to pass this bill in the next few days, and then we will be on the road to facing the present and future for our ASD loved ones. The current system is unfair and often completely bypasses what the individual needs and wants (especially if they lack parent/caregiver advocates). As Cathy Boyle, one of the wisest women in the state, said, “This is a homelessness/prison population waiting to happen.” We have thousands of spectrum kids coming up through the schools in Massachusetts alone. The schools can only take them so far. We need real solutions now.  If you live in Massachusetts, call your state rep and your state senator, and make sure they have signed onto H167. Your autistic child will thank you — one way or another.

Friday, July 20, 2012

Autism Mommy Swami #14: Hiring a Tutor

Dear Swami:

My son’s mother and I do not think he’s getting much out of his summer camp, which is supposedly tailored towards special needs children, it’s not worth the three grand for ten weeks.

What we’re thinking about for next summer is potentially hiring a one on one aide to watch him in one of our houses for 6-8 hours a day. We have no clue what the going rate is, or even how to go about doing this.

I’m guessing you have some experience in hiring aides, any advice or tips on where to go?
-Guy Rude


Dear Guy,

First of all, yes, I have advice. The Swami wrote an article about this in 1999 for Exceptional Parent Magazine.

You have asked for my advice, not my opinion. But I do have an opinion, but rather than express it outright and tell you what to do, I will ask you pointed questions so that you may decide for yourself.  What do you imagine your little guy will do with those long 6-8 hour days at home(s)? If you believe that his days will be more fulfilling at home, then pursue this idea. No matter what it costs, if a camp is mediocre, it is not worth it. And yet, is it feasible and worthwhile for Little Guy to be with only one person of uncertain training every day for ten weeks? Even if you were to plan a curriculum of 20-minute tasks and assignments and outings, 6-8 hours is a long day for both of them. There may likely be long moments of not much going on.

There are, however, midpoints that are not as risky as one or the other.  Perhaps you can send him to camp with the aide you hire, for the purposes of having the aide act as a liaison who can adapt the camp curriculum.  It seems to me that if you can show that Little Guy is not getting much out of the special needs camp, your school system should be getting involved. He should have an Extended School Year, and sometimes that can come in the form of an aide in a camp. From what I know of Little Guy, he should be getting ESY to prevent regression. If he is already getting this, then you must have your team reevaluate the program’s efficacy, and perhaps have them add an aide or find a different program.

Another midpoint is to have him do a half day of the camp (perhaps getting the tuition prorated for a half day, citing ADA accommodation as the reason; tell them Little Guy can’t attend a whole day due to his extensive needs). This way he gets his socialization/communication/community/physical goals met in the camp and then the other half of the day the aide can work on one-to-one communication/academics/pragmatics/community/computer/you name it.

For many years, long ago, the Swami hired tutors for Nat’s after school and vacation times, the purpose of which was to keep him engaged as much as possible. Our feeling was that if someone were always “in his face,” making sure he always responded in some way, it would keep him in the habit of attending to others. So the first thing we did was hire the person, after coming up with a job description: (hours desired, pay rate, qualities of employee — humor, flexibility, ability to think on her/his feet, dependability, punctuality.)

How did we find the person? 1) We advertised at all nearby colleges and also let teachers know that we were offering an opportunity for extra cash. 2) I simply asked aides and tutors what they expected to earn. 3) I called all references. 4) I set up times for the person to come and interact with Nat so that I could see if I liked her/his style and the relationship with Nat. 5) If I hired her/him the first sessions would take place with me in the room or nearby. 6) I would develop a curriculum: I set up a notebook divided into separate goal areas. In each section would be suggestions of how to meet those goals. For example, in academics the suggestions would be: trace alphabet letters in coffee grounds (sensory satisfaction); fill in the blanks of sentences; do Spell-A-Puzzle to practice reading… 7) I would provide space in the notebook for the tutor’s notes on activities and progress, what worked and what did not.

I would try to keep my expectations low at first because you really don’t know how Little Guy will take to this format nor do you know how the aide will turn out. Do not be afraid to model correct interactions for her/him and do not be afraid to fire them. If you have any kind of bad feeling, don’t hire them.  Many people can be worked with to give them better teaching approaches but no one can be taught compassion.

Good luck, my friend.



Thursday, July 12, 2012

Autism Mommy Swami #13: A Home For My Son

Dear Swami,

Autism dad, me, B, has consulted with attorneys and insurance pros for help with suggestions for how to set up a house, the tax and liability issues, for my son with autism. They really haven’t come up with anything. Any advice before I impulsively buy a house and post flyers for staffing it?


Dear B,

I take it that you are not coming to the Swami for matters fiduciary, financial, or otherwise legal & final. The Swami only knows about issues intuitive, soul searches, and heart murmurs. While I can’t advise you about whether to buy a house for your son, set up a special needs trust, get guardianship, I can plumb the question of how to do what you need to do.

I have lived through a lot and gotten to know many people along the way, so many parents who, like you and me, struggle with the right answer. The sooner we all realize that there are few single solutions, the better off we are. Unfortunately, parenting is not a science, nor an art, but a big sloppy cooking session, with only a few crappy implements picked up at other people’s yard sales. Sometimes the meal you make is great; sometimes it is godawful, but you just keep cooking because you gotta eat, and you must nourish others.  But don’t expect rave reviews.

Anyway, it sounds like you really want to buy a home for your son, because you ask, what is to stop me from impulsively buying a house…? Impulse is an important feeling. Impulse is Intuition’s embarrassing sibling.  But what you can learn from impulse is that there is something you want desperately. You want your son’s future to be secured in every way it can be. And because none of us knows what services and supports — if any — will be available in our children’s futures, we all want to do whatever we can given that reality.

I don’t know you or your financial situation, but I do know that you kind of want to provide a tangible shelter for your son. I know two other families who had the means to do this, and even though it came with many headaches, they do not yet regret it.  The Swami herself wishes she could buy Nat his own place, to share with friends and staff, but that is not possible at this time.

For many of us, the more we can control, the better. If you know this about yourself, why not pursue what it means? You clearly have attorneys and financial advisers and special needs experts to steer you through the legal and financial minutiae. I can’t do that. But I think what you want from me is validation as the dad, permission to do what you think is best.  In the end, the parent makes his best decision, based on honest research and soul search, based on understanding the child himself and what he wants and needs, and what he, the parent, is capable of pursuing.

Don’t do anything that would jeopardize your son’s eligibility, but do everything that you believe will help him survive and thrive.





Tuesday, July 10, 2012

Special Olympics: Nat’s Portal to the World

Today is July 10, and it would have been Eunice Kennedy Shriver’s 91st birthday. Six years ago today I was invited to a White House dinner on behalf of Ms. Shriver and Special Olympics (you can see Ned’s pictures here).  This lovely event was hosted by former President George W. Bush. I really appreciated the celebration he and his wife Laura put together for my favorite organization. Special Olympics was Nat’s portal to the rest of the world. It took him a few years to become truly open to the experience of team sports, hard physical practice, and loud crowded ceremony. Once he took that leap, he learned the most important thing in his life: human companionship is worth far more than gold. (But getting a gold medal is a great start!)


Remarks of Eunice Kennedy Shriver
The White House
July 10, 2006

President Bush, Mrs. Bush
Members of Congress
Stephen and Jean Case
Peter and Carolyn Lynch
Athletes of Special Olympics
Distinguished Guests

President Bush: thank you for your wonderful remarks. I could have no greater honor than to be welcomed to this amazing house to celebrate the ideals I have held so dear, for so long. And I’m sure I will not be able to express how honored I am to be here on my birthday. But I am not telling which birthday it is.

President Bush, you have been so courageous in your commitment to compassionate action, especially in your response to the AIDS crisis in Africa. And in addition to your achievements in politics, you have also managed to control Teddy, at least some of the time. PLEASE, please: tell me how you do it!

Mrs. Bush, children who are reading all over this country know you as their special champion. May they enjoy a lifetime filled with libraries, knowledge, and imagination and thank you for it. We are so honored by your gracious welcome here tonight.

Yet no matter how honored I am to be here with all of you, perhaps there is a greater honor still. Many years ago, the prophet Isaiah wrote,

If you do away with the yoke of oppression
If you spend yourselves on behalf of the hungry
And satisfy the needs of the oppressed
Then your light will shine in darkness
And your night will become like the

Tonight, I thank each of you for I believe that the noonday light of justice is shining around the world because of your enormous generosity. For in your dedication to our campaign and to over 2.2 million athletes of Special Olympics, you have each sought the light of the prophet.

When the athletes asked us for better health, together we answered YES, and over 340,000 athletes saw a doctor at Special Olympics! When non disabled young people asked us for the chance to learn more about our athletes, together we answered YES, and over 1 million young people welcomed Special Olympics into their schools. When families asked us for more hope, together we answered YES, and over 30,000 family leaders created networks of caring.

And most importantly, when athletes asked for a chance to play, together we answered YES to the skill, the courage, the sharing, the joy of 2,250,000 athletes in 168 countries around the world. And they have triumphed in the noonday joy of sports -— Champion athletes! Champion citizens! Champion human beings!

Mr. President, the honor we celebrate here is the honor of being part of a movement that is working one village by one village; one person by one person, one attitude by one attitude to change the world. Special Olympics athlete leaders and Best Buddies leaders and all the family leaders remind us that it is not just about “them” but about each of “us” as we journey toward being the best we can be.

Tonight as we celebrate, we know beyond us lies a dangerous world. And sadly, throughout my lifetime, it has been so. World Wars, regional wars, ethnic wars, religious wars. O that they would cease! O that we could do better than war!

But one thing has changed in my lifetime. When I was young, my sister Rosemary was told “NO.” And I remember so well as my mother sought help. Over and over again, she heard “No”—no place here, no program here, no welcome for your daughter here.

Tonight, Rosemary is in heaven, and I miss her. But despite the struggles of her life, for 86 years, she was patient and kind; she never put on airs; she never judged, she always forgave; she loved to look pretty, she savored chocolate and she made everyone happy. She taught us all that adversity meant almost nothing—that it could always be fun to be together no matter what. And I know she is joining me from heaven in thanking all of you tonight.

When we wake tomorrow, let us not forget that we have miles to go to overturn the prejudice and oppression facing the world’s 180 million citizens with intellectual disabilities. But what joy for together we have begun.

May you each continue to spend your lives in this noble battle.
May you overcome ignorance.
May you challenge indifference at every turn.
And may you find great joy in the noonday light of the great athletes of Special Olympics!

Thank you and God bless you all.

Monday, July 9, 2012

Don’t be a hater

I’m feeling sad about Nat again, maybe it’s because I was trolled by a commenter in my latest Swami post. Not trolled, exactly, but judged. This person made a jab about moms who “ship their kid off to neglectful institutions so that they can have their freedom.”

I don’t know for certain if she meant me, because it is not true about me, but the point is, why the hate? Here I was, trying to express my joy with how Nat has blossomed in adulthood. In looking back, I see that for the most part, his growth has made it possible for him to understand the world better, and in turn to feel more comfortable in it. His inner comfort has led to a calmness that allows him more learning. And so, the more he learns, the more he understands, the better he feels, and so on.

I wanted my readers to know that this has been my observation, and that in fact many of my older autistic friends tell me this with regard to their own lives, and my older mom friends with grown-up autistic kids have found the same thing, regardless of functioning level. And we, in turn, have found a certain measure of equanimity and peace as we age along with our mellowed-out sons.

My happiness later in life springs from many things, Nat’s growth being one of them. My growth is another factor. Getting older has given me a little bit of perspective about life, as it does with most of us. The trade-off of losing your fresh youth is that you acquire a soothing knowledge.

I am also happier because my children are turning out nicely. And so has my career. But, yes, some of my happiness comes from having more free time than I used to, because all three of my sons are older and more independent. To my greatest delight and surprise, Nat became more independent when he left home to live in his school residence at 17. He did not “act out” once. There were some nights in the beginning where he asked to sleep at our house, and so we had him home a lot, and I came to visit him all the time during those days. I agonized over that decision for a year, not knowing what he would make of it. Would he think I was “shipping him off?” Or “discarding him like a used bellydance costume,” as another hater once posited.

I’m agonizing a bit now, too, because of that comment, as stupid as that may be. Don’t all of us worry about the thin shades of truth in any sweeping generalization? I am freer now because Nat’s not here. I did pick out a place for him to live, the structure and make-up of which was somewhat dictated by the state bureaucracy. Does that make me a callous mom? Does that make his house an “institution?” Does the fact that Nat does not live with me mean that he is living in “neglect?”

No. I know that was all sent to me in confusion and anger and the impulsiveness we all find when we hide behind our computers. So easy to wound with the Send button, to draw blood with a faceless email. I’ve done it, too.

I guess what I’m saying now is, life is hard enough. Why go out of your way to hurt people? If my truth doesn’t match yours, you can shrug and move on. Hate just doesn’t help. And I think we are here to love, because we need to perpetuate our species, and we do that by being happy and helping others be happy, too.


Friday, July 6, 2012

It Gets Better

Riding along with Max today it struck me how happy I was. But this is typical when I’m on my bike (and with Max). Again and again, the wide open sky is my source of ecstasy. Going fast into the rushing air, or pushing up into it working so hard that my arms tingle at the summit — this is my element.

If you’ve been reading, you know this. But I mention it today because it occurred to me that I always want to be outside. I want to do as much as possible outside. I live for the hot weather, so I can be outdoors as much as possible (coffee on the porch, lunch on the porch, dinner on the porch or at an outdoor cafe). Riding, riding, riding.

Working, too. Now I leave. I am out of my house, in the world, teaching, speaking, traveling. I’ve even been involved in politics. I write controversial stuff. I’m out there, people say.

It was not always like this. When I was a young mother, I was inside. All of my hobbies were indoors: decorating, painting, sewing. I ran in place or did the Nordic track. I did not work outside the home. Even though I wanted to. One one hand I knew I couldn’t because I had the babies, Nat and Max, and I didn’t want to get daycare — not out of some moral issue, but more because I had no idea how you hired one or more importantly what my job was going to be. I imagined people working, and it was like a sitcom version. It felt unreal, impossible, far away. And far away is out there.

I didn’t want to travel. I dreamed of old trips I’d taken — out to the Northwest as a kid, to France, to Italy to Israel. I didn’t know how to do it anymore, in my late twenties, early thirties. Our only vacation was Cape Cod, safe old place.

I was so fearful. I remember being afraid, vaguely, of crowds, or stores. Of strangers, germs, sharp things lurking. I forced myself to go out, because I had small children who needed the outdoors. But I was so scared.

I was thinking about this as I rode swiftly downhill, a little scared but in a normal, thrilling way.  How different I am now. Like nothing can contain me. I go outward, and it’s not even enough. I now want to go away for my fiftieth birthday, alone.

Why am I writing about this? Because I just had to tell you that the scary alone shut-in days come to an end. You won’t always feel like this. Oh, I know you are not me, but in a way, you are. If you’re an autism parent, you probably know what I mean. (And before anyone screams and accuses me of blaming autism, just stop it. I’m not blaming our children, or autistics; but I am saying that parenting, especially with this particular disorder in the mix —  is tough to handle in one way or another and there’s no getting around that. It’s hard, that’s the truth. For our children and for us. There is so much unpredictability with autism in their lives, and thus there is so much unpredictability in our lives, when they’re young especially, so much worry. What might he do? Will he be unhappy there? Angry? Overstimulated? Will others understand? Will they stare? It’s very, very hard and we love them and those two facts exist side-by-side.) How will he be when he’s older? Should I be doing more to help him? Sweat, sweat, sweat. So much effort and stress. I just wanted to go to bed. Or at least just stay in my house, eat, and watch TV.

Sometimes it’s easier just to stay indoors. So do it, if you have to. I’ll tell you what: stay inside, but when you feel stronger, go out. It doesn’t last forever, you eventually figure it out. Just like them. Because here’s the thing no one is really talking about it — our guys, especially our guys, seem to blossom as they get older.  Not only is Nat’s adult life not a dead end, it is a beautiful beginning. And I am giving you this sugar (coat)-free.

One thing I’ve learned from Nat is that the world falls into place. Whether out of sheer familiarity, perhaps, or something more: development and education, or a steady diet of parental patience and love — they/we begin to understand more. With or without language, maybe never saying “I love you, Mommy,” having playdates, or getting a high school diploma. They really really learn how to live their lives.  The world may still be loud and unpredictable, but even that is something they learn to expect. Just like all of us, our autistic guys develop their struggle muscles and grow.

And why not? Don’t we all?

Monday, July 2, 2012

Autism Mommy Swami #12: Masturbation

Dear Swami,

We have a 13 year old son.  He is basically moderate to higher functioning, for whatever that means (lol).  Puberty has hit this poor guy in a big way and we are having issues with his time for his uh, well, masturbation sessions, or PT (private time) as we like to call it around the house and others who have no idea what we’re alluding to.  He had a few episodes at school being caught in the bathroom, and now he is in summer camp and had his first and I fear not his last episode today.

 We have tried to explain to him that he can only do it in our house in specified areas and written social stories as well.  Although he seems to understand that there are limitations, it’s so difficult not having the where with all about how taboo it is, and how disturbing it is to others.  I feel bad for him as he’s asked me for PT time in the tub (it’s main area to do it) and let’s just say it’s evident he needs that time, and this can’t be helped.  My hubby tries to help too but nothing seems to help him get past the urge if you will.

All the other mom’s I’ve asked about this either say their son doesn’t do it, or they aren’t aware they are doing it.  I guess I am the only one with a kid with Autism that masturbates in public places!!!!…. I don’t think so.  It’s a huge problem for us right now.

Any info or resources you could offer would be wonderful.  He’s is our only child, so I don’t have much experience in this whole arena if you will.  I almost lost it when I saw his first underarm hair 3 years ago, so you can imagine how it is dealing with this!  

Thanks so much

Dear B,

Ah, yes, the M word, the Swami knows all about this as do all of us because masturbation is as normal and human as breathing. Everybody’s doing it, or wants to, or is thinking about it, or has just finished, or will get there in time. None of the moms talk about it because they are struggling with it, too. This the Swami promises you. It’s just that none of us really knows how to talk about it and there are not really great resources for us, either. (Although I have to say that Dr. Peter Gerhardt is the one I’d go to. I know him, he’s a delightful guy, and is very direct and can-do. He has written and lectured on sexuality and ASD, and I know there is some literature out there that he’s put together.)

Clearly you are very aware of the challenge here, and the gravity of the problem. I commend you for already having helped him find a good place (the tub) and a name for it.

That being said, it is best if you can approach this milestone as calmly as possible. Your boy will pick up on your stress as it is, and so the more at peace with this phase you can be, the better. Problems become nightmares when we try to deny or suppress them, when we allow fear to consume us and taint the act with shame. The more you can de-mystify this for him, with clarity and calmness, the better it will go for him.

When my Nat was about 13, one of us caught him “at it.” I remember actually feeling sad, but in a kind of normal way, because I realized that he was no longer a little boy, that he truly was growing up into being a man. I think I must have said something about privacy, closing doors, etc. And Nat, God bless him, began calling it “making privacy.”

So take a moment and feel the triumphs you guys have achieved so far, and know that the rest will come. When a problem is fresh and new we think it will last forever; it rarely does.

The public place aspect is, of course, the scariest and most serious part. Have you asked the school for help, as tough as that may be? What do your specialists say?  When I need to bring it up to various staff people in Nat’s life, I try to be as clear as possible while at the same time making it clear that I know none of us wants to talk about this, but we must. I maintain the attitude that this is a person’s human right. Okay, so what can you do? For starters, I’d tell him that there are only two places he can do this: in his bathroom with the door closed, and in his bedroom with the door closed. That’s it. Nowhere else. A public bathroom is just too risky, too public.

Your guy is likely a concrete thinker, so the clearer and more absolute your rules and messages are, the better. Not punishing, but clear and firm. What are the rules that he needs to understand?

First of all, this is a normal act, and it is perfectly okay that he does it. You can tell him that, as long as you then also tell him that everyone has to abide by certain private time rules:

1. Where: only his bathroom or bedroom with door closed.

2. When: you decide and let him know, but base it on when he seems to need it most. We all have to be aware of time and schedules, so this is not cruel. If you notice him touching himself in the tub, you can say, “Do you need some private time?” and let him tell you. This way you are also calling attention to it and making him aware that what he is doing needs to be attended to (by him), that it is important. In terms of during summer camp, you should probably have a talk with the staff that this is an issue you are all working on, and get agreement on how to handle it so that you are consistent across the board. They can tell him, “Private time at home,” because I just think that using public bathrooms is too risky. And you don’t want the staff to have to be around during, or anything. Only the innermost circle of trusted people (doctor and you). They can try to distract him, always provide other desirable choices, even help him realize that it is difficult because we all do have the urges, but it is okay to do something else until later. Everyone has to learn this anyway, not just him!

3. How: Alone, only by himself, with himself. No one else may touch his private parts except his innermost circle of trusted people — doctor or parent/guardian and only then with an explanation why and asking permission.

The only other issue is how to help him complete properly. Depending on his language level — and it sounds like he has a lot of language — explain that he is responsible for the clean up. We had to tell Nat many many times over the years what was appropriate in terms of clean up. And finally after about 7 years, he got it. But we had to be firm, clear, consistent, and calm so that he could understand what was expected of him without feeling any shame around this very human act.

This is tough, but not impossible.