Life Skills & Independence: On Adolescence

Charlie looking back at me on an afternoon walk (on a muggy day) My friend Bonnie Sayers recently wrote a post on BellaOnline about toilet training adolescents on the autism spectrum. Bonnie has two sons on the spectrum; her younger son, Matt, is 14 years old; next year he will be in the eighth grade and in middle school. Bonnie writes that he wears Good Nites underpants and has since he was 5 years old. Her insurance will no longer pay for name-brand diapers; she received 'very large generic winged' adult diapers instead in her last delivery but due to these being so different from what he is used to, Matthew has 'indicated' he won't wear the new diapers. And Bonnie would like him to start high school (as he will, after his one more year of middle school), without diapers, and brought up toilet-training as a self-help goal at a recent IEP meeting for Matthew. I'll quote what she writes:

The feedback I received at the IEP was that the Middle School has never done toilet training before so they did not have any information to proceed with. The teacher stated the time taking Matthew to the restroom would take away from his school work. An example of Matthew’s school work is he sorts chips, nuts and bolts and does puzzles. I think toilet training is a life skill that is more pertinent to his independence than spending another year doing the same thing he has done for many years thus far. The IEP team also brought up special education centers, which is not an appropriate school setting for Matthew.


Bonnie looked online for information about toilet-training adolescents on the spectrum and found some
resources (books, websites with documents about toilet training) that she references on her post

But she also notes that most of the information on this topic is geared to children who are elementary school age. And that's all the more reason why I wanted to write about this very private matter of toilet-training adolescents—older children—on the spectrum. Bonnie is right-on that 'toilet training is a life skill that is more pertinent to [Matthew's] independence than spending another year doing the same thing he has done for many years thus far'—being able to handle wearing underpants and to stay 'dry' especially in different settings (school as well as home, not to mention public places) makes a huge difference in a child's, and his or her family's life and activities. It's not 'just' about being able to go into the bathroom and do what needs to be done, but about 'quality of life,' independence, the extent to which one can be 'aut and about.' 

And Bonnie's post also reminds me how there's a lot more to be done about addressing the needs of older children on the spectrum. Susan Senator has written about some of these concerns (a recent post was about her son Nat's final IEP meeting—gulp) and Laura Shumaker recently wrote about adolescence on The Thinking Person's Guide to Autism. There's plenty out there about Early Intervention and 'getting started,' but much less about, as Bonnie notes, subjects like toilet-training an adolescent—because people are saying to themselves, that ain't gonna be me? If we don't have toilet-training by kindergarten……? Sort of the way I used to think, if Charlie is still in special education when he's five, what are we going to do?.

Well, Charlie has never not been in a special education class and now he's in a special education center, no longer among 'typical' kids his age. It's a school placement that has its disadvantages, particularly no interaction opportunities with 'typical' students, though (to be quite honest) Charlie had none when he was in an autism classroom in a public middle school, so this is something of a moot point. One advantage of him being in a center for kids with disabilities is that the various 'behavior issues' that kids on the spectrum may have can be addressed in a space in which those 'issues' aren't considered 'weird' or 'stigmatizing,' but the sort of things that need to be addressed. And bathroom business is certainly one such issue.

Without going into excruciating detail—I think it's necessary to maintain a sense of dignity and decorum in addressing this topic for an older child—Charlie was toilet trained at the age of 3 using the 'intensive' ABA 'potty party' method: You stop doing everything else and have your child sit (diaperless) on the toilet all ding-dong day so he learns, that is where that goes. We did this when we lived in a one-bathroom apartment in St. Paul after which we indeed said good-bye to diapers. 

I'd like to say that was the end of the toilet-training business and we went about our merry way dealing with numerous other 'issues' for the next ten years. 

Well, of course not.

As with many skills that Charlie has been taught, basic 'mastery' was just the start. Keeping the skill and maintaining it: We've been working on this for years and I think (but I could be wrong) that Charlie is pretty much independent in this area.

Not that there hasn't been a lot of laundry to do along the way.

Even after he was trained and out of diapers, every time Charlie started in a new school program (and, by the time he was 5, he had been in four different ones, with four different sets of staff, not to mention having had 3 different teams of in-home ABA therapists) required long discussions with everyone involved. There'd always be talk of 'taking Charlie on a schedule' and efforts to have him learn to 'initiate,' by placing numerous PECS cards with a toilet icon around the classroom, for instance. Accidents were not unheard of and every year (including now) I send in a bag with a full change of clothes, couple pairs of underpants and socks, and everything labeled. (Though now that Charlie has been growing so much, one year he came home wearing someone else's sweatpants 'cuz he'd outgrown his extras.)

In fact, for years I've carried a good-sized bag, so I could have an extra change of clothes (and a plastic bag) at hand for Charlie. (I confess, I've rolled my eyes when hearing someone talk about how glad they were to get rid of the diaper bag.) Gradually I only did this when we took longer, car-less trips (as we used to on the train into New York). These days, our longest trips are to the beach so I have extra clothes packed for Charlie anyways.

Too, for years, every teacher and therapist had to be told not to ask Charlie 'do you need to use the bathroom?" When he was about 5, Charlie—no doubt due to all the attention cast on this particular issue—had one standard answer to that question: 'No,' and even if there were other quite obvious signs of 'no' being not the case at all. (I'll leave those signs to your imagination.) For some years, prior to leaving the house or before Charlie went to bed, we always said 'let's go to the bathroom,' a gentler sort of command but not a question. Eventually, those requests were met with 'no,' too. 

In other words, this whole business about bathroom use is in many ways about Charlie and us negotiating for control, and Charlie asserting himself—which is, indeed, a positive thing. After all, so much is out of Charlie's control due to his limited speech and communication and much, much else. 

And then this past year, Charlie has pretty much taken the whole matter under his own purview. At home, we never tell him to go and he's been taking care of it himself, thank you very much. As there are some moments when it does seem somewhat more than clear that something needs to ensue, we've had to learn to exercise some parental control and not keep urging or asking Charlie to go; indeed, to let go and let be. Let's just say, he gets himself where he has to be now; he's not inclined to want to deal with the aftermath of what happens should he not make it.

There are many academic skills (reading, for one) that Charlie has a long long way to go with. But he does seem to have gained almost full independence in this particular area. Mind you, just a year ago while in the public middle school program, Charlie was back to having picture cards with a toilet icon in his schedule and to having to go into the bathroom at set times. 

Life skills aren't 'just' life skills. They take learning, problem-solving, thinking, planning ahead, negotiating, strategizing. For instance, some days Charlie adamantly refuses a walk; while we're hanging around the house, he'll stop doing what he's doing (watching a video, perhaps) and get himself up to the bathroom. Afterwards, he often requests a walk or bike ride, now that he's ready.

As for me, I still tend to carry a largish bag, its interior filled up no longer with extra clothes for Charlie but with my own work files. And maybe, too, a book.

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Comments
23 Responses to “Life Skills & Independence: On Adolescence”
  1. Nicole says:

    C’s preschool refused to reinforce potty training at school. They didn’t even have him take off wet pull ups ones (he always came home soaking wet so I started writing numbers on them to identify the ones that returned, and 95% did). The first two weeks he was out of school and it was warm enough inside to go around half naked, we did a DIY potty training boot camp. Didn’t leave the house for two weeks. He was 4 1/2.
    As an aside, A, who is typical, also refuses to use the bathroom when asked. We went from asking to gently coaxing to telling him “go to the bathroom or else…”. Kids, both the typical and atypical kind, can be stubborn!

  2. emma says:

    I’m laughing and crying.
    Dimitri’s favourite thing to do with the PECs icon is throw it, somewhat adamantly, on the floor. CONTROL! I totally get this.
    I try not to phrase the toilet subject as a question, but sometimes forget…
    This is an important subject, life skills, adult supports, (IEP’s), meaningful tasks/work. I hope Bonnie finds some solution with the school, not wanting to include this on the IEP is more a reflection of the teachers fears and hang-ups than anything else.

  3. I had a student come to me when I worked in a residential setting directly out of a psychiatric hospital, he was 16. The records indicated that he entered that setting not toilet trained. He came to me toilet trained. If the psych hospital where they were truly ill-equipped to deal to with a large teenager with autism managed it, it can be done.

  4. autismvox says:

    It’s a real myth that ‘autistic kids don’t / can’t / don’t want to change.’ Sometimes it’s us people around the child who get stuck in our ways…..
    Have definitely overheard parents in public restrooms wheedling their kids to go ‘because this is your last chance for a looooong time.’ —- One former classroom once sent home underwear full of you may guess what. Charlie had apparently had an accident in the morning—-and they left his dirty clothes ‘plus’ in his backpack for the rest of the day, just like that: Not exactly sanitary!
    Though I should note that some teachers have gone out of the way to completely help clean up Charlie. This one really depends on the individual!
    We still only have one bathroom in our house and it’s on the second floor so ‘planning’ is definitely required.
    And I’ve even reached the stage of ‘how important is a little more laundry’ if there’s the occasional slip-up.

  5. Barbara says:

    Very important topic – well, I didn’t need to say that. The educational setting dilemma you described is bizarre. I hope to follow-up on Bonnie’s blog later.
    I commit to keep encouraging parents to keep trying to teach their children and ask for help no matter the child’s age.

  6. Melanie says:

    I’m glad you brought this up – we have been stuck in a “holding pattern” on this issue for about 2 years. My son has half the battle down well, which is great, but not the umm..less pleasant…half. Our OTs say it’s a physical development issue and not to worry. But as Kristina said, diginity, decorum and independence matter with and to our kids as they get older, even if they can’t always show it. My boy is demonstrating and requesting independence in so many other ways, that it would be so nice for him to be fully independent in toileting, too. If I had a magic wand…

  7. autismvox says:

    I hope you can follow-up with Bonnie, Barbara! I’m always a little hesitant to write too much on this topic but it is, well, yes, so important.
    @Melanie,
    We were definitely in a ‘holding pattern’ for some years. Sometimes it would seem like ‘we had it’ and then not, in a big way (ahem). Things went back and forth but somehow, in the past year, Charlie has been pretty much communicating that we should ‘leave him alone’—maybe he just got fed up with us fussing about him so much…..

  8. michelle turner says:

    Being independent in toileting and feeding oneself are a couple of the most important criteria in job skill placement as an adult. I worked for an ARC type of social service agency for 16 yrs. If a person needed assistance in either of these areas from the staff, they could not be at the regular workshop or gain a community-based job placement. I disagree with this policy, but it is true in our area and may be so for many other agencies. I now work in the schools and none of the teachers or therapists were aware of the limitations these skills not being met would have on their students’ futures. Thankfully our transition coordinator is working to educate the teachers and OTs on these matters. Teachers do not ususally see the big lifelong picture…they see the school year and maybe the following school year. My son is still quite young, but due to my work with the over 21 y/o programs, I am always thinking of how things may impact his adult life. Toilet training and self-feeding goals must be included in the IEP!

  9. autismvox says:

    I think I’m going to quote you about this!

  10. Nicole says:

    It’s not just the teachers, a lot of time it’s the system. My mom teaches special ed self contained math (mixed population- severe LD’s, aspergers type autism, mild intellectual disabilities, severe ADHD, etc). Even though these kids often don’t have essential life skills (knowing their phone number, knowing how to count change, knowing how to tell time, etc) she is expected to teach them prealgebra with accommodations (7th grade curriculum). Accommodations mean they use a calculator for all problems. Which means any basic math skills they have gained they loose through not using them and become 100% dependent on a calculator. Their test scores go up, but the skills they’re going to need to get and hold a job, navigate society, etc are lost.

  11. farmwifetwo says:

    I still wipe my 8.5yr old’s bottom after a bm. We still have bm battles. We still use a laxative. We’re trained, he really isn’t. We use goodnights for during the night and underwear during the day.
    One day…. I hope toiletting is finally off the “to do” list.

  12. autismvox says:

    I didn’t think it would ever be off the list, frankly!
    I guess Charlie is kind of out of the system now, Nicole, at least as far as the whole business of testing. It could be said that Charlie was getting more academically challenged in his old school but I’m assessing at what cost. And certainly his recent independence with the things like the bathroom is just a huge step. The jobs I can see him first trying will be ‘menial’—janitorial and the like—but now I think it might be possible for him to have one, any sort of one, and maybe not in something like a sheltered workplace.
    And Nicole, the students you describe—as they meet the test requirements, are they then just moved onto the next thing, without regard for where they are with those life skills…….

  13. Barbara says:

    Drat! I must’ve missed the word verification earlier when I thought I left a message. I read Bonnie’s post but she seemed to not so much want help as to give many references and resources. Read her last sentences.
    I’m posting with another slant on this topic tonight – keeping the commitment I made above.

  14. autismvox says:

    Oh no, sorry your message didn’t go thru.
    I always like to get suggestions and just to know what everyone thinks—definitely yours, Barbara!

  15. Jane says:

    This is a critical life skill for future employment, inclusion, personal safety and to maintain dignity.There are not many studies on teaching toiletting with adults with autism. The only one I know of is by Okuda, 2001.
    We did the potty party too. 2 days 8 hours each.

  16. autismvox says:

    Thanks for the reference—are there any studies for adults with developmental disabilities more generally and toileting?
    I have very good memories of the potty party we did.

  17. jane says:

    http://seab.envmed.rochester.edu/abstracts/JabaAbstracts/37/_37-097.Htm
    Wilder, Higbee, WIlliams (1997) – this one is a version of Azrin and Foxx’s method (potty party).
    There might be more. Generally, there are not many studies on adults.

  18. autismvox says:

    thanks very much—

  19. Shannon says:

    The activities backpack that goes everywhere with Leo has a full change of clothes (and a plastic bag) at its bottom. We haven’t had to use them for a long time, but I would still never go on an excursion without them.
    Leo recently started wearing underwear to bed, which made me think it was time to write a post on our kids and toilet training. So I’ll be on the lookout for resources for Bonnie, too.

  20. Jill says:

    I well remember the days of toileting my teenage male students. Fortunately I had two aides to help but cleaning up a six-foot, 180-pound young man wasn’t easy, especially since a couple of my students were dedicated anal diggers and fecal smearers.
    I certainly feel for the parents who struggle with teaching their older children to use a toilet. Some people with autism never “get” it and the attendant smell and improper behavior cause them to be even more ostracized than any yelping or flapping.

  21. Kim Gordon says:

    I am on day 27 of toliet training my 17-year-old who had never before used the toilet. We just had our first accident-free day today. I have been working with a nurse who toilet trains for a living, and I couldn’t have done it without her. I am blessed that she is in the Chicago area where I live, but she has had clients come all the way from California. She is amazing. I would be happy to share more info if anyone is interested.

  22. autismvox says:

    That’s wonderful! Would it be possible to find out about what kinds of programs/methods you have used?
    Thank you so much—

  23. Kim Gordon says:

    The strategy is simple, but indescribably difficult. After a one-day seminar with Wendy, Noah and I were on lock-down in my 10×10 kitchen for two weeks. He was made responsible for “listening to his body” and putting all of his “potty” in the potty. The responsibility included his cleaning up after accidents. The difficult part is dealing with a tantruming, non-verbal 17-year-old in a puddle of pee on the floor, not to mention INTENSE cabin fever. Eventually, the tantrums subsided and he began to have more and more success and has transitioned back into school. We are not out of the woods yet, but the progress made in 29 days (after 17 years in diapers) is nothing short of miraculous.
    The key to the whole process is the 24-7 phone support from Wendy Sweeney. She is a registered nurse with six kids and has helped potty train over 900 kids in the last 8 years. You can get more info at her website: http://www.bootycampmom.com.

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