Susan's Blog

Saturday, September 8, 2012

Higher-functioning peer models: why?

Inclusion, peer modeling, these are the sacred cows of disability. Far be it from me to slaughter something so holy, but I gotta speak my mind here. Throughout Nat’s school years, it seems like all I wanted was for him to be in the Promised Land of Brookline Public Schools’ hallowed halls. But he never was. There was never a good enough, small enough, well-trained enough classroom for him there, and it sucked, becuase I was able to get a scholarship for him, who knew that there would even be scholarships for short people. But still, inclusion is what almost all we autism parents wanted, and still want. Everyone, from your support group to your neurologist–the high priest of autism professionals–tells you that Inclusion is Best. Thou shalt have Normal Role Models; this is the First Commandment of  Autism Treatment.

Sorry about the extended metaphor and capital letters. But this is how it all appears to me. Inclusion has with it the crushing weight of a command, a guilt-laden should. Why is it so important? Because the focus of the world is generally to herd us into the corral we call modern society, or the real world. Some call this mentality “Ableism,” whereby we use Normal, or the usual, or the most common modes to be our standard.

I’m not going to debate that one, either. I do live in this real world, after all. But I also live in the world of autism issues, and I understand deeply and harshly how those real world demands can work against some of us. You who are not autistic, or related to one, do you know how it feels to live your life against the tide?  Where struggle and feeling wrong are your norm?

As Nat’s mother, I am so tired of the hierarchy of brains. If everyone needs to be with normal or at least higher-functioning role models, who will want to be with guys like Nat? I’ll still never forget the time I asked one mom of an Aspie if her boy could have a playdate with Nat. I’ll call this mom Betsy — that’s her real name, after all –Betsy said to me: “I just don’t know what Sam would get out of a playdate with Nat.”

Ouch. No wonder so much of the world back then looked like closed doors. I am pretty sure it still does, to so many younger autism parents out there. And older ones. I hear from my advocate friend how whenever he is trying to put together a group home, there is always a parent who insists that at least some of the other roommates are higher functioning than her son, so that he can learn from his peers. After all, what would he get out of someone lower functioning (read: like Nat).

What, indeed? My feeling here is, how can you “get” something out of someone if you’re sure you have nothing to give? If you feel that your child is only having a worthwhile experience if he is absorbent, how will he ever learn to shine on his own? How do you even really know that there is nothing to gain from being with someone who isn’t overtly communicative?

I think many people delight in Nat’s company. Nat is so different from the average bear, he forces us to take notice. You watch Nat and suddenly you look at social mores, conversation, personal space in a very different light.

I have no doubt that Nat gets a lot out of his current roommates, even if they are categorized by some as low-functioning –as is Nat. They smile, they have fun. Nat also went to a private, non-inclusive autism school. I used to worry so much about the lack of  “peers.” And all the while, Nat was learning how to communicate, how to work in a group, how to be an employee, how to take care of himself, his personal needs, how to understand money, holidays, reading, colors, counting…must I qualify all that is Nat?

No. Because you can’t qualify human beings. Some do not count more than others. If we’re doing it right, always growing, learning, becoming better, then it’s not the guy with the most toys who wins. It’s the guy who can enjoy himself most of the time, and bring joy to those around him.





A big benefit I see to including students with Autism and other students with disabilities with the general education students is not for what the typical peers can reach but rather what they can learn from our special needs students. I just started teaching in a public school where apparently Autism Awareness month is greatly celebrated and there’s a program in place where gen ed students can buddy up with an “A-Team” student for the year & who volunteer for us for Special Olympics. Our gen ed students learn with and interact with students with Autism all across the spectrum…I see this as away of preparing a more aware and patient/tolerant society. Having previously taught at a charter school for students with Autism where inclusion was not possible, I’mlooking forward to this experience!

— added by Candace on Saturday, September 8, 2012 at 8:18 pm

I agree with you! It seems like we’ve moved past the idea that children with physical disabilities “hold back” typical children. But we still are so hung up on grouping kids according to IQ. Parents of kids with typical kids don’t seem to want their kids taught with those with cognitive disabilities, and parents of kids with cognitive disabilities believe their child will do better if around children with higher IQs. It’s actually a very bizarre way of looking at life/relationships/what matters.

Excellent post.

— added by Louise on Saturday, September 8, 2012 at 8:31 pm

I think if the individual is moving ahead in whatever setting they are in, that is what matters most. I have very mixed emotions about what I have seen in the public schools down here and who gets placed where and for what reasons. Last school year was great for D and even though he is in the same classroom again the dynamics have completely changed and I don’t think for the better as far as he is concerned, so I asked for him to spend a half hour a day in a typical classroom just to give him that exposure and to see how he does. Its rough down here in the public schools and even though they are obligated to pay should we decide to go private (mckay scholarship) I havent seen anything out there that seems like it would be better, and yes I have always been told inclusion is best as well. Also, autistic individuals can be low functioning in some ways and higher in others. I think Nat is a great role model in so many ways, I will be thrilled if Dylan is able to do the kinds of things Nat is doing now that he is an adult. I guess low or high functioning really depends on who you are looking at, but to me it sounds like Nat is doing great!

— added by eileen on Saturday, September 8, 2012 at 8:52 pm

That is so profound!

— added by Sarah Conley on Saturday, September 8, 2012 at 9:01 pm

Love the last line…BRAVO!

— added by Candy on Sunday, September 9, 2012 at 12:58 am

I have written several times on my blog Facing Autism Disorders in New Brunswick about the need for a flexible approach to inclusion with a range of education options depending on the needs and abilities of each child. My son started school in a mainstream classroom and came home each day with self inflicted bite marks on his hands and wrists. When he was removed to a quiet, individual teaching area for instruction by his autism, ABA trained education aide the biting stopped. Now in high school he begins his day in a resource center with other challenged students and has friends in the center. He also has breaks there. He does have opportunities to be around other students when engaged in activities he is good at like swimming or on some recreational and other outings in which his aide accompanies him. This “mixed” or “flexible” inclusion works for my son. The evidence of what each child requires is what should determine educational placement settings not a pre-determined philosophy. Some children with autism disorders can do well in the mainstream classroom, some can not. The evidence should determine the placement.

— added by Harold L Doherty on Sunday, September 9, 2012 at 2:20 am

I’m tired of hearing “socialization” is what we get out of school and school only. If that is the case, what do people do with the rest of their days… sit locked in closets and ignore the outside world?? Do we not “socialize” constantly with family and other people in our midst?

Yesterday for the first time ever Russ responded without prompting to a stranger.
Bank Teller: How are you today? (no name used, no visual prompting, no prompting by Mom to pay attention)
Russ: I am fine.
Was that not the most perfect unscripted social interaction??? Also, it was in the real world not in school.

I’m with Harold on the flexible inclusion. I truly don’t think mainstreaming children just because you can is appropriate. Yes, I read the “but they get so much out of it” line in the first comment above but IMO that’s just crap. They lose out on a lot more like unscripted interactions, flexible learning situations (I don’t agree with Harold on the unending ABA since I think that children should learn to learn… but we can’t always agree 🙂 ) and other people at their developmental level that might actually think Octonauts are cool at the age of 10 not 3.

By forcing them into integrated classrooms you’ve simply IMO turned them into the token “disabled guy”, just like the other situations of the token “colour/nationality/religion” person that has gone on for generations in our schools/jobs. This is humiliating and disrespectful. Instead there should be appropriate intergration – and I am not happy about those at the moment where I am and have paid for out of school music and now swimming lessons during school days but that’s another story. Situations for interactions that are easy, friendly and not forced… sitting and watching Octanauts anyone?? Peer helpers when they go to Special Olympics or other outings. This will help much more with disabled/abled integrations than shoving them into situations where they can’t contribute and others are trying to acheive a goal and aren’t willing/able to make accommodations at that time.

— added by farmwifetwo on Sunday, September 9, 2012 at 9:11 am

yup. I agree with you and Harold, too. My other point is more about looking at how the world is still,so skewed towards typical being best. Even my other two sons, neurotypical both of them, were a bit oddball for a while because I didn’t force extracurriculars, like all the other cookie cutter families. Both sons stuck to their guns and did their own thing, and have felt very fulfilled being eccentric.

— added by Susan Senator on Sunday, September 9, 2012 at 9:47 am

I have two young sons, one on the spectrum and one typically developing. They both attend an “Integrated Playgroup,” where kids on the spectrum and NT kids are placed together. Even though my autistic son is supposed to be learning from his group, and my NT son acting as a role model, they both equally enjoy the groups and are learning valuable social and play skills.

— added by Kristy on Sunday, September 9, 2012 at 9:52 am

True. I am mostly concerned about the snobbery involved with high functioning, or normal, or thos whose kids “pass” for normal.

— added by Susan Senator on Sunday, September 9, 2012 at 9:55 am

I can completely understand your feelings here. This sounds like a mutually beneficial situation, with respect, openness, and sharing.

— added by Susan Senator on Sunday, September 9, 2012 at 9:57 am


— added by Susan Senator on Sunday, September 9, 2012 at 9:57 am

So true!

— added by Susan Senator on Sunday, September 9, 2012 at 9:58 am

Actually had the opposite happen to me. I had a person who had a non-verbal child tell me that my ‘high functioning’ child didn’t need as much help when it came to school and related services and that ‘at least he could talk’. So frustrating when there is comparing and arguing within when we all want the same for our children, wherever they may land on the spectrum. I am also not a big fan of the term ‘high functioning’.

— added by Jenn on Sunday, September 9, 2012 at 12:25 pm

I published a brief essay about the benefits of integration for the population as a whole, not ‘just’ for kids with identified special needs. if you’re interested, let me know, and I can email it to you.

— added by Laura on Sunday, September 9, 2012 at 8:13 pm

I’m one of those younger autism parents. Thank you for this deep breath. In my short journey so far, I’ve felt like inclusion is just one more of those CRITICAL things I must set up RIGHT AWAY

— added by Jenny on Tuesday, September 11, 2012 at 1:09 am

and it becomes so much more difficult because of the apparently competing agendas among parents. (I feel like I’m begging for playdates for my nonverbal, high needs child.) What a bunch of crazy expectations. But I know that my child brings joy, physicality, cuddles, humor, and independence to whatever setting and whatever interaction he’s in, and regardless of the “ability” of his play peers. Thanks for this reminder, Susan.

— added by Jenny on Tuesday, September 11, 2012 at 1:14 am

I had never thought about this from your perspective. Thank you for your thought-provoking words!

— added by Silvia on Monday, September 17, 2012 at 5:18 am