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Tuesday, 2 December 2014

Intellectually Disabled Adults and "Age-Appropriate" Interests

Well, I'm back :) I finished my 50 000 words for National Novel Writing Month with a day to spare, took a couple of days off, and am ready to get back to my regular writing routine. And to start it off...yesterday I got an interesting email from a colleague with some thoughts on the about the perception within the support community that it's important to encourage intellectually disabled adults to engage in "age-appropriate" activities. It got me thinking.

I've been lucky enough to see agencies wrestle with this idea, and come out on the side that if intellectually disabled adults find joy in an activity that isn't "age-appropriate", there's nothing wrong with it, but apparently it's still an issue for some people. I can see reasons why it's a concern - intellectually disabled adults tend to be infantilized by society (and even by agencies) as it is, and why would staff want to encourage behaviour that feeds that dynamic?

But, as a society, we're reasonably tolerant of non-disabled adults who choose to engage in "non-age-appropriate" activities. Comic Con conventions are full of adults who love to play dress-up (and their costumes are awesome, by the way). Plenty of adults collected Beanie Babies when they were the rage. I love to play with Lego, and doesn't everyone have a favourite Disney cartoon?

And, as my colleague suggested, when non-disabled adults draw we call them artists; when intellectually disabled adults colour, we label their interest in art "non-age-appropriate" and take the crayons away.

Intellectually Disabled Adults are...Adults

I have a friend who collects knives. I don't get the appeal. But I'm not interested in telling people what their interests should be (unless pursuing those interests is harming others), whether it's a very "grown up" interest like collecting the labels off of wine bottles or whether it's making window decals using a kit (which I used to do). I'd like to think that most adults feel the same way about other adults with whom they associate. But even though I think there's increasing awareness that (gasp!) intellectually disabled adults are adults too and should have the right to choose their own interests, regardless of how "age-appropriate" they are. there are still some problematic attitudes about the whole business.

It's a double standard. Especially so in light of the fact that while we insist that intellectually disabled people have "grown up" interests, we all too often don't acknowledge that they're grown-ups in other life spheres:

  • We don't provide comprehensive relationship training and sexual safety education

  • There's still not nearly enough education about self-advocacy skills and talk about why they're important

  • People still don't have much control when it comes to their services and who provides them.

These things aren't constants across all agencies, of course. Some agencies are doing a fine job with relationship training and sexual education, and are making great strides with self-advocacy. And Ontario's transformation of services over the last few years has been all about giving people more control over services.

However, it's important that we as support people get our collective heads on straight on whether we want be a culture that supports all the adult rights of intellectually disabled adults, whether we're going to continue on this path where we look at them as children (which is not only unfair to the people we support, but sends a message to society that it's okay to do so as well), or whether we're going to go between both points of view, picking and choosing when we view intellectually disabled people as "adults" according to when it's comfortable to do so.

The last option isn't acceptable, in my opinion. We have to go one way or the other.

And don't we all know which way is the right way to go?


  1. Nisha Benny-Varghese2 December 2014 at 02:16

    Thought-provoking post I never thought about intellectual disability and age appropriateness

  2. It seems like it all boils down to a combination of choice and also exposure. I totally agree that intellectually disabled adults should pursue whatever interests them, not matter how others perceive it. On the other hand, it's not a bad idea to make sure that to the extent possible, they are shown options other than their old childhood interests. It may even be okay to introduce the idea that as a person goes from being a child to being an adult, their interests MAY change. They don't have to, but they often do. What I see sometimes is adults with intellectual disabilities who maintain child-like interests and personality traits largely because: a. few people bothered to introduce them to other experiences, and b. people around them like them to be cute and "innocent" so without thinking about it they reward more child-like behaviors. There needs to be more middle ground between cooing about how adorable it is for 40 year old Joe to still be a huge SpongeBob fan, and punishing Joe for not watching Law & Order episodes instead.

  3. Age appropriate interests are not the issue for many with IDD - it is more to do with age appropriate behaviours, especially in public situations.

  4. You're absolutely right that this is an issue. I've seen failures on the part of staff and caregivers to respond to non-age-appropriate behaviour that makes me squirm, particularly when it's along the lines of hugging virtual strangers or indiscriminate phrase of the phrase "I love you"...not only does it potentially make other people uncomfortable, but those kinds of poor boundaries make people vulnerable. And I think that staff and caregivers need, to the greatest extent possible, to help intellectually disabled adults understand that non-age-appropriate behaviours make them appear certain ways and that there may be consequences. But there's that thorny question of how far our "interventions" should go...if a person chooses to continue the behaviour knowing the potential consequences, do we have the right to stop them (provided that it's a behaviour that's not infringing on someone else's rights)? What if the person just doesn't understand? What do we do? These are questions that I wish I had the answers to...

    Thanks for your comment. You may have brought on another blog post for me. ;)

  5. All of these are very valid points. This is why I keep insisting to people that say, "Well, why would you take that person to theatre/movie/ball game? They'd probably be just as happy with a trip to MacDonald's" that no one knows what *anyone* is going to enjoy until they've been exposed to it, or why they might enjoy it. It's good for *everyone* to have exposure to as wide an array of experiences as possible. And the conversation that interests change as we grow up is one that could easily have fit into the conversations that I had with youth when I was doing transition planning with them. That's totally stuff that people need to hear, because many of them have had these assumptions made about them that these things don't occur them, when they may have actually thought about how they used to like this but would like to try that now and just never told anyone.

    I think what I'm trying to get at is that we just need to treat intellectually disabled people like they're people. It's such a simple thing, but it gets made out to be so complicated. Provide opportunities to try new things, listen when they say that they've had enough or they don't like something, assist (if they want) to think of ways for them to do more of what they do like, whatever it is, and don't judge. Isn't that what we'd all want from the people who are supposed to be supporting us?

  6. The push for always having people do age-appropriate activities seems to have lost steam over the last few years. I think we're moving through into new thinking about it. Thanks for commenting! It's nice to see you here. :)

  7. Beth,
    you raise a question that I had not thought of. One area in this, too, that we have to be careful is in the area of involuntary things such as tics as a result of Tourette's Syndrome.
    Some things, too, may not be "appropriate" for certain settings, but okay in others. For example, swings at the park - many adults enjoy swings - I've been at the park and I've seen adults using the swings - so there's nothing wrong with that. But, would it be appropriate for an adult to go to the playground when school is in session and do this - especially an adult male? Or, would it be appropriate for an adult to fight with a young child over a swing or rush over to the swing and try to "race" a child to the swing - unless of course it's a game you're playing with a child that you know, such as a cousin? Obviously, if someone enjoys swings, they have a right to do this activity regardless of age. But, it may not be appropriate for adults to enjoy this activity in every situation

  8. And that's part of what makes the issue complicated as well - helping people to people understand when a behaviour is okay and when it's not. It would be difficult to explain why, in that swings example, it's okay to use the swing most of the time, but not in very specific situations...

  9. Great take on the double standards! Well said.

  10. I gave the idea of, for example, people who might say: "I love you" indiscriminately some thought. And, this does pose some more deeper level things that one might imagine. I worked with someone who would continually ask women to marry him. This person had a brain injury due to a motorcycle accident at age 17. In all likelihood, if this had not happened, he perhaps might have had the choice to settle down and get married. Instead, he is living a life in a group home surrounded by working relationships. Staff are in positions, when he makes statements such as, "I love you" and "Will you marry me?" to "correct" him, and tell him that this is inappropriate.
    As I evaluate this, though, is it? While it might make people feel uncomfortable, the question is: Is it inappropriate for him, as an adult, to want to get married. Generally, his statements are treated as a joke or as a, "Poor, so and so. He is so lonely." Sometimes, staff will inappropriately play up his request and flirt back with him (young female staff). More mature staff will take the opposite approach and show disgust and tell him how inappropriate he is being. One particular time, though, I took an advocacy position. He made his repetitive statement (due to his brain injury, it would not be possible for him to remember the answer he had received when he asked the same question 10 minutes earlier): "Will you marry me?" This time, I asked a different question and framed it differently. I said, "No. I can't marry you." But I followed this up with a question of: "You ask that a lot. Do you want every woman to marry you?" His response was a flat out: "No. I want true love." Honest. He knew. He wanted a real relationship.
    As I evaluate this, other people who receive services who pursue intimate relationships and are encouraged in this manner generally don't go around saying: "I love you" to everyone they meet. They understand true love and intimacy.
    So, while there is that need to assist people with "appropriate" social skills so as not to offend or be targets of other people's inappropriate intentions; there must also be the recognition, as noted above, that people are adults, and certain "inappropriate" skills, rather than being a result of inappropriateness in and of itself, may the result of normal, human and age-appropriate desire that needs to be supported and encouraged in a healthy manner.

  11. There is nothing "age appropriate" about developmental disability in any way. We all need to respect the individual where they are. Nothing is wrong with their interests, no matter, how infantile or strange it may be as long as it is not causing harm or injury to their self or others. We need to provide them training and services a the level the enjoy and understand, whether it is in an "age appropriate" or a more childlike level and/or medium. The goal for them should be the same for them as for the non-handicapped: to become a better person through learning.

  12. I completely agree and would add that we can think about meeting them at their interest/developmental level but also never stop exposing them to higher level material and experiences. Many of those with developmental disabilities have trouble initiating their true desires and wants, and are stuck in familiar patterns. I think honoring some of their interests (spongebob), but also bringing in age level (or higher) material and experiences is key. DIR/Floortime and RPM (Rapid Prompting Method) are wonderful methodologies to think about when thinking about supporting this idea.

  13. Yes, respect is the key, of course, Haloperidal. As I said, I'm not interested in policing peoples' interests, whether they're disabled or not, and I don't think that it should be the place of support worker to police interests, either. I think that sometimes people should be made aware of potential consequences of publicly pursuing certain interests (like, if someone decided that they wanted to be part of the protests currently going on in the US, for example, a support person would have the responsibility to help the person understand that even though this is his/her right, a consequence might be arrest, and to discuss ways to keep safe as safe as possible in a large crowd). I think that the question of safety and right to risk continues to raise questions about how much right support people and caregivers should have the right to intervene as intellectually disabled people pursue their interests...tough questions, sometimes. But ones that need to be grappled with.

    Shelley Nicole, I'm not familiar with the methodologies that you mention. Where can people get more information about them?

    Thank you both for your comments!

  14. I don't think that anyone should have an inquiry like that responded to as a joke or especially in the shaming manner that you discussed because, as you said, he's trying to get a genuine desire met. Is it in an appropriate way? No. But when you're staff, you take it on that some things may potentially make you feel uncomfortable and that you have to respond in a way that's *especially* not flirting back or shaming the individual for something that they can't control. Be professional (not you, support people generally). That irks me.

    I too have been in a staff position with intellectually disabled people who have assumed that I was either a friend or someone that they could ask out on a date, and it was difficult for them to hear at first that this wasn't so, and to realize that part of my job was to, if they were lonely and wanted to make more friends, assist them to plan ways to meet more people and hopefully have some friendships develop. The Circles program in particular is a good tool for helping people identify the different "circles" of intimacy in their lives and what behaviour is appropriate within each circle - like, I hug the people in my Family Circle (I can't remember the exact names of the circles, so this might not actually be one) and tell them I love them, but for people in the Neighbourhood Circle, I shake hands and I don't say "I love you". It can address behaviour or prepare people for their social goals - or both.

    But if after going through that training, someone still says, "Well, I like giving hugs, so I'm going to hug whoever I want" - well, their choice, right? Sometimes we try very hard to protect people from bad decisions...and it's not always easy to see if the time has come when it's more respectful of someone's right to step back and say, "Okay, your decision." Does that make sense?

  15. Thank you! I figured you'd get it. ;)

  16. I think age appropriateness in terms of interests is subjective.
    Jim Henson made puppets and voices for them his entire life, and he meant his work for young and old. Stephen King still writes about the boogeyman and J.K Rowling thinks up magic.
    I attend Sherlockian events where we "play the game" (which is Sherlock is real, just very old and retired, bee keeping in Sussex)
    As well as having an autism spectrum diagnosis myself, three of my sons do as well. The twelve year old has an intellectual disability and language impairment. He likes Scooby doo, muppets, classical music and nursery rhymes. He also enjoys civil war documentaries, Neil Degrasse Tyson Lectures and Fall Out Boy. I do not see him dropping the childish things any time soon and if anyone tried to take that from him, its gonna be smack down at the service providers. ^^
    As to whether, perhaps we do not introduce more serious adult past times/issues to adults with intellectual disability, I think you are right in saying it IS dependent on the caregiver/service provider. It SHOULD BE about having as much control/decision making as possible and continued focus on improving independence especially where those other life spheres you mention are concerned.

  17. Hi Amanda! Nice to see you here!

    It is very subjective, isn't it? My father and I went to see the "Penguins of Madagascar" movie over the weekend. I found it delightful, and never once felt funny about going to see a "kids movie".

    I suspect that there's still a double standard here even at society at large...when I was doing reading for the Ethan Sandler piece (which should be up soon if it's not already), I read a comment by a woman that asked why he was "allowed" to see such a dark, violent movie as "Zero Dark Thirty"...as if people with Down Syndrome should only be permitted to view light, fluffy comedies...so I'm allowed to go see a "kids movie" if I prefer, but intellectually disabled people aren't allowed to go see "adult movies"...*frown*

    Your son sounds like he's a very well-rounded individual, and I'd hope that no service provider would ever try to change that. As far as I'm concerned, your smackdown would be entirely appropriate if they did!