Do we expect too much from our autistic kids?
Most of these kids, ages 6-12, had their noses buried in Gameboys or the equivalent. Few conversed. I said hello to one or two; none made eye contact and only one mumbled a return greeting. There was no possibility of conversation.
These typical kids spend virtually all of their time moving through a series of activities that are wholly planned and managed by adults. Any time that is not managed is spent in front of the TV or the computer, or on a cell phone. In general, these kids take ordinary classes, finish school when the school bell rings, take part in extra curricular activities of their choice, and have few additional demands placed on them - of any sort.
Amazingly, I saw no concern on the part of their parents that these kids were not making eye contact. No one seemed to care that they were not conversing. There was no expectation that they'd make their own beds or meals - or even speak on their own behalf to a clerk or waitress.
Yet children in autism support classes are expected, from a very young age, to make eye contact and learn to converse with their elders in a polite and civil manner. An autistic child caught playing on his own with a Gameboy is immediately pulled away from the activity and engaged in a social interaction. Children with autism are expected and taught to make eye contact, manage daily self-help activities, and generally participate in the adult world in a manner rarely dreamed of by typical children.
Add to this the fact that autistic children in public schools are often asked to manage many more transitions and challenges than the average child. Consider that children with autism:
- Are expected to take standardized tests, yet are rarely as fully prepared for the tests than the typical child (after all, their IEPs don't include test prep - and children with autism are often in therapy sessions when test prep is going on);
- Are expected to handle MORE transitions in the course of a day than the average child. Many go back and forth to a resource room, to therapists, and to social skills groups;
- Are expected to engage appropriately with typical peers, despite the fact that they're often in typical classes only occasionally. And, regardless of the fact that they're socially challenged, they're expected to somehow overcome any stigma or anxiety that comes along with being an outsider;
- Are expected to learn not only the academic curriculum but also a complex social, communications, sensory, and skills-based curriculum which is essentially an "add-on" to the typical academic load;
- Are expected to behave appropriately at all times, or suffer significant consequences which would not be visited on a typical child - in part because behavior plans for autistic children are already in place and ready to be used, while teachers don't have the time or support to manage the behaviors of typical children;
- Are expected to finish school for the day and then, rather than watching TV or taking karate, must then continue with intensive therapies, specialized treatments and other far-from-relaxing activities.
- Are often expected to conform to a unique diet that excludes them from enjoying ordinary treats of ice cream, pizza, or birthday cake - and yet still engage appropriately during parties and kid-friendly events.
Comments
My child’s IEP includes test preps and adaptations. My son does get pulls outs, but by now after so many years, he’s used to it. I do expect my child to behave appropriately within his ability. He also get’s help with his anxieties within school from the school. The complex social, communications, sensory, and skills-based is an on going learning thing. That’s never going to happen in one year nor should any expect it. I’m not sure that the significant consequences due to behavior would be any different from those with autism than their typical peers, I know plenty parents in my kids school who get calls too. I think many teachers are able to help and support all children within the class. This year, my kid get’s to play video’s for a half hour before home work
I have no special diet for my son. I don’t force my child to make eye contact. He will when he’s ready. I don’t pull him away from video games, it’s what we use as a grounding method since he does like video games and it does help fine motor skills and eye to hand skills. Why yank it away?
Maybe prior to grade school when my child was younger, life was filled with being much busier. As he became older, intensive therapy was less and less but that’s just our experience. The summer before 1st grade, we gave up ESY and private therapies. There simply was not the time in the day for it all and that first summer, my son got to play like any other kid and not worry about making appts. on time.
I don’t envy any one else’s life. We deal with what we can do and the things we cant we work on.
wow – you sound so sane, Sandy. The only way I felt we could “quit the insanity” for Tom was to simply pull him out of school altogether!
we really did try hard to get things like test prep, band, and other things on his IEP. The answer, over and over, was “the IEP is only supposed to relate to deficits.” As a result, his entire education was geared toward remediation.
maybe it’s just my lack of solid advocacy skills, but man! I went to IEP workshops, consulted with advocates, printed out forms, came to every meeting with sheafs of paperwork, wrote down everything and shared my notes with everyone, created my own communications forms (which the teacher promptly forgot about), research, selected and purchased my own math curriculum at my own expense… and STILL couldn’t seem to avoid a really third rate experience for my son.
In the long run, I couldn’t even imagine the school providing a positive situation for Tom. It just wasn’t a realistic expectation.
So we moved, and became homeschoolers!
Sigh…
Lisa (autism guide)
Interesting. I was just thinking earlier today that it must feel to my kid (now a young teen) that he’s been incarcerated since he’s been age four. In order to home-school in our district (for my kid), you have to be certified and multiply-credential. So, I’d need to hire a tutor with those credentials and then file a suit — in order to homeschool. BUT this is something I have seriously considered.
My kid has been reprimanded for things that kids in a ‘typical’ program would have never had even hit the radar. Once you enter the realm of closely examining someone’s ‘behavior’ every movement; every emotion; every simple action becomes suspect. It’s a demeaning way to receive an education (as mandated by the state).
Lisa~ Had my son gone to our school district, I am sure we’d had many issues. My last IEP with them was 5 hrs and we still weren’t done. My school district had budget issues long before that was ever popular and it seemed they were afraid of due process so when I signed that one line of disagreement of the IEP, they moved a muscle. Also, I always went to meeting with the IEP book bought. Maybe I didn’t know every single law at the time, but I had it right there to find it. One big fat book just in presence can be quite effective. But like you, I chose alternative schooling only home schooling for me would never work. I choose Charter schools as an option. My son once in 1st grade, went from class to class for reading, math, Spanish, Music plus his pull outs so transition is an issue but we fully prepared him and as long as it was ‘routine’ he does very well. When it comes to tests, written ones and reading, they know he wont do well and so do I. There’s not much I can do about it or expect the school to do but to keep on trying. My kid may never ‘get’ some things and there’s really no one accountable for that. Some kids have a hard time with concepts and even though my child is good in math, asking him to write a divided math problem 3 different ways stumps him. kind of stumps me too. For state tests they have him in a smaller setting with 4 kids.
Socially in school, my child is quite passive and most of my troubles behavior wise is in less restricted area’s where less adults are. Also, my son always did better with adults since they weren’t at eye contact level.
When dealing with the school, they are my ‘pals’ and I try not to give them the impression me being the parent always knows best or places me above them. We have two different roles really. I allow them to be the ‘expert’ since really, I am no academic teacher. They see things I never do. I took him prior to school starting to meet all his new teachers and for them to meet me aside from an IEP. My kid needed to make that connection without the peers there and it has helped alot. It’s also helped all his teachers so far have had blonde hair which is something that works for my kid. They kept telling me he could read but at home, you’d never know he could. Although my son’s school is a Charter, they’re still teachers, special ed people and they want to help a child do their best. I here and there never got daily notes, but I figured that made up for some of the things I as a parent forgot. It was the social skills teacher who presented eye contact in a manner that made sense to me. Prior I could had cared less since my son gives me eye contact. I let the school work on that eye contact, at home I’m happy. I have had my fair issue with the school, and part of advocating got a Para on a bus for the first time in the 12/ 15 years the schools been running. I saved the ad from the news paper
I do not think there is a perfect school or perfect academic placement, and not every one can home school and not every state has Charters schools and if they do, a child may not make the lottery. I don’t think I have extra high expectations of my child nor of the school. Neither are miracle workers. I don’t expect my child to be a grade A average and it’s not that my expectations are low; I know things are hard for him. I think being the parent is where those expectations are- of our hopes, our dreams and who our kids grow up to be. I think for the most part my child is just that. He has child-like fun, play and naughtiness but it is me the parent who worries, get’s the calls and the looks
I have to add that I want my kid accountable for his actions, even if his typical peers do not get attentions like-wise. It’s different for my kid, who has different rules than his peers. AS an example, my child is not allowed to say certain words since he repeats so I’d want the school to remind him of those rules we have at home and had they not, we’d end up with more behaviors than we already have. If a typical peer is told to stop or given the evil eye, often they do stop or at least comprehend the why’s of it. That is not so with my child. My child needs same consequences for most every thing and once you don’y follow through, mixed messages are sent to him and he becomes confused socially and behavior-wise. I only have one child, school is where my child is going to get his social education and if school, parent and child aren’t on the same page for that child regardless of typical peers and what goes on with them, my chil dmay never learn social acceptance.
You obviously haven’t met my typical kids. I was scoffing at a book’s mention of eye contact when I realized my youngest met the book’s requirements of not needing to work on eye contact.
And my oldest loves to meet new people, unless she’s tired
To some extent, I don’t think we expect ENOUGH of our NT kids! The amount of flat out rudeness and lack of character drives me insane when I see most NT kids in action, from the ages of 18 months, all the way up to adulthood. I could get way up on my soap box about this one.
However, to answer your question, in general, YES, I definitely think that we expect much more from our kids with disability than our NT kids, from school schedules (which is one reason we’ll be homeschooling) to behavior. I watched a family in a doctor’s office the other day. They had a (to the naked eye) NT son about two years old, a daughter about 4 and a newborn baby. The 4 year old daughter was using a walker and had some developmental delays. She was having some fun swinging her feet around as she lifted herself off the ground as if on monkey bars and her parents scolded her and told her to keep her feet on the ground. The 2 year old boy however, was allowed to run around, kick the counter, etc., without any admonishment.
I have noticed at times that I do expect more from my daughter with autism than I do my NT son. Part of that too is the double standard of boy and girl (I don’t mind him doing things that she shouldn’t – terrible I know!). Part of it is that my 4 year old daughter imitates a lot of what 2 year old son does, so at any given time, his behavior is age-appropriate, or ability-appropriate, while hers is not (for her age and what I know she’s capable of on a different day and trying to determine what’s poor behavior and what’s ASD and where that line gets blurred and when to care and when to let it go). It’s something I’m working on.
First off, I want to say I agree with Laura: most people don’t expect enough of their kids.
Back to the point:
This situation was dealt with, in a fictional way, in the novel “The Speed of Dark” by Elizabeth Moon, which I wrote about here. I think this comment from the protagonist of the book, an autistic man trying to understand his place in the world, says it all:
Hooray for sanity! My daughter (HFASD) was in therapies from the age of 3 1/2 -she’s now 7 yo. This child was working from 8-4:30pm M-F- I ask you – what other NT child was doing this? The result – loads of therapy, not a happy child, stressed out child, couldn’t accept playdates child, lonely, overworked child. We got rid of that horrid schedule and started having her schedule mirror NT kids. She now “works” from 8-1pm everyday and then we go where the NT kids are – swim class, music class art class. The result – happy, happy child, laughing child, child making more social contacts, more playdates, more friends! Was all the therapy worth it, yes, in the beginning. But as she’s grown we have remembered that she’s a child first, the ASD comes second. All that time in therapy was beginning to suffocate her other talents – she’s quite the swimmer and the abstract artist, and loves her music (piano and violin lessons). WE now have more time for walks with the dogs and she’s learned every single type of dog from those walks – faster than she learned in therapy. So I say early intensive therapy is good, but once they reach 6 and 7 start developing their other talents because they have them, and watch them zoom!!! You’ll never know if you have the next Olympian, Mozart or Jackson Pollard if you don’t explore all their dimensions!
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First, I want to say I agree with Laura – most parents do NOT expect nearly enough from their NT kids.
Lisa, you can go to all the classes and consult with all the advocates you want. If you don’t take the advocate into the meetings with you, you won’t get what you ask for, because they will BS you up and down. My son has always had test prep, band, etc. in his IEP, and that is because I don’t take their BS.
That said, it’s a tough world out there. We won’t be around forever, and he has no siblings or other close extended family to take care of him. If I baby him behavior-wise, how will that help him out there in reality? It won’t. Autism/Asperger’s is not an excuse for poor behavior. As a result, I have a child who is happy, well-behaved, and EVERY teacher likes him. And even though I am his Biatch Mother that they hate, they will go out of their way to help him.
The administrators are another story, he costs the district money. That’s why I take someone to meetings with me. That’s why EVERYone should.
So hard to generalize on this one – I can only relate to what happens in our family. Our NT 5 yr old has chores and expectations for behavior and attitude that our 7 yr old ASD will never be held to. He does not have to try a bite of every veggie, turn the TV off after 1/2 hour, make his bed, practice tying shoes – these are all things that are WAY above his skill level or would result in a horrific, never-ending tantrum that gets us nowhere. I don’t think we baby him – we just expect him to do his best on the things he is capable of doing – the same as his sister. If he masters something, we up the ante but it has been a loooong time since we have been able to do that!
I decided to meet and teach each of my children NT and ASD where they were and bring them to where they could be.
Always progressing to become Independent, Productive, Self Determined, Integrated and Included individuals.
All of them are different so the outcomes for each one look different.
I do expect manners…and oh yes the middle school years do raise their rude hats, but the polite seed had been planted and they as individuals have the free choice to be polite or not….and reap the consequences for poor choices.
Many people tried to pity my sons on the spectrum, I did/do not treat them any different than my other children.
For Example they all had chores at the level that they could handle successfully.
My Oldest son with ASD came home from high school informing me he did not have to do chores why? because he had Autism…
When I asked him to help sort his laundry, he informed me he could not…why? because he had Autism.
It turns out they had an Autism specialist who came in and told them about all of the deficits one could encounter if one had Autism.
My son believed them and would go through the checklist in his head to inform me what he was incapable of accomplishing.
I helped him over come that attitude…I put him into our car and drove to the icecream shop, one of his favorite places. I bought him a little slushy in a cup and I bought myself the largest butterscotch dipped cone possible then I proceeded to eat it in front of him, enjoying every moment.
My son looked at me and asked if he could have a butter scotch dipped cone too. I looked at him seriously and said no, you have Autism.
We drove home in silence. He got out of the car went into the house and did his chores without my asking, helped me sort his laundry and helped another sibling with their chores.
Yes later we all went to the ice cream shop.
Bonnu, you crack me up!
Tom has told me more than once that it’s ok for him to do things over and over and over again because he’s autistic, and that’s what autistic people do.
I explained that autism was an explanation – not an excuse. Yes, he can do SOME things over and over again – but good grief, not EVERYTHING!
Weirdly, it really helped.
Lisa (autism guide)
Wow, I’ve often wondered the same thing myself. From some of the therapies I hear of, it’s as if these kids are employed in fulltime jobs. I’ve felt sad for some kids, wondering how much more isolating this must be rather than being in a regular setting or just being with their family. Seems like that would be more beneficial, depending on the situation. And I don’t blame my boys for being stressed having to shuttle them from preschool (where they have several therapy lessons), to daycare, sometimes to grandma’s house and then finally home. I’d be stressed too!!! That’s why on weekends, I try to make a point not to go anywhere, so they can just stay home and enjoy being kids.
You have not met my two boys! I have been accused of being mean (yes, you are right, I have high expectations), having manners from medeval times (having them write thank you notes), and sheltering them. But, I need them to be people who other people want to be around while they are being productive citizens.
I also have the wonderful opportunity to work with children on the autism spectrum. I only wish my own children received the same love, caring and attention I see my students receive. We have only had three “special” teachers between two boys and 22 years of combined education.
Yes, therapy schedules are tough, but we signed up to be parents, right? I took my son to therapy and practiced skills daily and had to figure out child care for his brother, but it is what we do as parents.
I hope we ALL have high expectations of ALL of our children. Don’t settle for ordinary or ok!
Quote “Yet children in autism support classes are expected, from a very young age, to make eye contact ”
YES people expect to much, My son is Autistic and makes no eye contact at all. Yes it bothers me at times, but that’s just the way it is. Its part of being Autistic…
This article opened my eyes in some ways, how it must be in big cities with loads of people. Our community (5 towns combined) have a total of 1,000 or less, and we all know each other, or of each other. I didn’t have to fight for an IEP, and haven’t since preschool. The people I work with (I call them and me “chazz’s team”) because that is exactly what we are. Our focus is to make sure he is prepared for testing, socialization, classroom work, everything a ‘normal’ child would be doing. He gets pulled out of class for speech because HE asked for speech therapy, and for equine therapy. His school takes that into account, and the 1.4 teachers have no problem with it, because, in the long run, it’s part of learning. We’re lucky in that my son is not penalized for his equine therapy (school right down the road flunks the kids who do the therapy for that class, no matter what) and the 17 other students see my son as “that’s just Chazz” (they say that about any other student too, with different behaviours). It’s a small family at that school, and could not ask for any better for my son. I see my son as just a kid-no better, no worse than any other. He may have his special talents (4th grade, reads at 12.9 level, yes, I’m proud!) but those talents aren’t the whole of him. Recently he asked to start going to church-one more way of socialization, one more way for him to learn of the world-and he loves every minute of it.
I feel bad for the parent who sees their autistic child as a problem, but I’ve never walked in their shoes. The spectrum is so wide, so diverse, that it’s no wonder people freak if/when they hear their child is autistic, not realizing there is a wide range. I know I did at first, but my next step was to learn about Asperger’s.
Knowledge is power.