For Children with Autism, Don't Set the Bar Too Low

Lisa

As the father of a child with Autistic Disorder and profound developmental delays I do not believe, with respect that the examples of High Functioning Autistic and Aspergers individuals should be used to lecture people about how to deal with all autistic children. There are serious issues concerning the appropriate learning environment and understanding how to help lower functioning autistic children. With respect, you do not have the personal life experience, as the mother of a high functioning child to lecture people on how to deal with severely affected low functioning autistic children. Nor do your examples prlovide that background. Try learning about the realities of those severely autistic persons living their lives in institutional care, or who require constant medical attention because of self injurious behavior.

It is really time you stopped addressing autism issues across the spectrum based on your personal experience with your high functioning child.

Respectfully,

Harold L Doherty

Harold I found your comment a bit sad. I am high functioning, to a great extent I believe because I remained undiagnosed for much of my life and so had to try and live into other people’s expectations of me. Ok I may not have fulfilled my ostensible promise but I am pretty good. “If you expect nothing you will not be disappointed”

completely agreed. my 12 yr old boy has autism, but he is not high functioning. he is also not low functioning. his problem has been a teacher who pushed him TOO HARD and caused him to meltdown, resulting in him being thrown out of school. instead of trying to make a ‘cookie cutter’ statement about all autistic children- do some research. some people expect too much from them.

so Harold, i agree with YOU.

What is interesting about Keller and Grandin is the limited choices of ‘help’ and intervention at the time compared to what there is today. It seems for both, one person made the difference which goes to that connection made between the disabled person and the therapist providing the therapy.
I wouldn’t say of teachers or parents that they substitute pity and compassion for understanding and respect. For many children, it does appear many things actually physically pain them to endure. The natural reaction IS to prevent that for a child, more so when they’re a very young child. And it’s also unfair to say a teacher may not provide the tools and resources to meet the challenge. That is the job of the IEP team to provide that to the teacher. No teacher is actually perfect, and I think it’s time they’re acknowledged for all they actually do for disabled children.
con’t

cont
I wouldn’t under estimate the role of the parent speaking for the child. If the child is non verbal, the parent would speak for them however that is modeling for the child just the same which is very important. If a stranger comes up and talks to my child, he still turns his back and doesn’t respond. Is that such a bad thing? But before I expect him to talk, we have to then go over the rule of “don’t talk to strangers” and my son was actually doing what he’s been told. What if he talked to the wrong stranger and they abducted him? There always is a fine line and each parent deices how to cross it. I also don’t agree that if you take your child to an autism special event, that those parents have no hope the child could never attend otherwise. I think for some children, that would be the first step to working towards attending otherwise. It would be the best opportunity to work with the child of proper social behavior.

Bottom line really is, each parent really does know when and where to push their child, however each parent has expectations thrown at them from all directions and so would teachers. Setting the bar for the child’s level should actually be what each does.

Harold – every time I think we will be in agreement, we seem to be in dispute. When I read your blog – and see how you do, in fact, raise the bar for your son and support his achievements, I become even more confused.

Do you think the bar should set at ground level for your son or others like him? My strong sense, based on your writings, is that you agree that any child should be encouraged to do as much as he can, as well as he can.

Sandy: whatever the IEP team says, some teachers have a very, very hard time avoiding kindnesses that wind up lowering expectations. This is, obviously, not an overall statement, but rather an observation.

Lisa

Lisa~ there was nothing obvious about it. You didn’t state it as a personal observation about teachers “Caring teachers allow children with autism spectrum disorders to step away from even the slightest social and sensory difficulties, .” based on your experience; you have to say directly it is your experience otherwise it reads as a general statement.

It’s quite common for parents who do homeschool to had based that choice on educational experiences, and most who do homeschool including yourself always tend to shed light on teachers in a negative manner. You almost have to have on-going experiences with IEP’s to keep up on writing about them. Showing kindness doesn’t always equal lowering expectations or not using tools and resources. Parents should not assume that is the norm. In my own opinion, I’d much rather have a kind teacher lowering expectations than a teacher who has no kindness and has too high of expectations.

Oh my, what a wonderful post, the topic of which is rarely discussed.

The beliefs of others often hold our children back, including our beliefs as parents. A doctor or a psychologist tells a vulnerable and scared parent, ‘your child has autism, don’t expect too much’, and presto – they don’t.

I have seen many many children including my own, written off because they presented as too ‘autistic’ at a young age, a presentation that landed them up in a lousy special school, or in a classroom that simply wasnt for them.

Shoot for the stars and presume competence always. What your child looks like today has absolutely nothing to do with what your child will be like 6 months from now.

Having been my child’s advocate now for over 18 years, (and he is doing very well now) I and he have suffered from others fears and beliefs about what HE could or could not do. I never listened to them thankfully and would never allow anyone to speak about what my child can or cannot do. That’s just self fulfilling prophesies in the making.

One of the odd things about autism is that sometimes a child has much more portential than is obvious. Of course this can be the case with anyone, but especially in the case of autism since the impairment often affects the ability to communicate. I have heard many stories of parents whose kids finally learned how to communicate (whether by typing, speaking, or using a communication board) and turned out to have been understanding and learning much more than it appeared. And stories of kids who seemed unable to do a certain task (such as using a computer to make an animated movie) but then with a different approach mastered that task. And, there are cases of kids who improved much (in communication, education, behavior) with biomedical treatments.

At the same time, sometimes people with autism have severe impairments which are not so amenable to treatment/education. So it is extra hard to know how much any approach will help. This is a challenge!

BTW, although Stevie Wonder’s blindness does not affect his ability to sing, I imagine it did affect his ability to do many things important in a music career, from reading music to communicating in various ways with the many people involved, to dressing with style. I’m sure there must have been people providing support and encouragement as he found ways to work around a variety of stumbling blocks.

His mom had a hard life and overcame significant challenges to provide a better life for Stevie. When he won his first Grammy he asked that his mother walk to the stage with him, and he handed the statuette to her. He has been quoted as saying, “Her strength has led us to this place.”
http://www.boston.com/news/globe/obituaries/articles/2006/06/11/lula_mae_hardaway_75_mother_of_music_icon_stevie_wonder/

Good article. I agree that children with autism can achieve more than people may expect of them.
But I have to disagree with the “autism events” part. Sometimes it takes these kinds of events to get parents to even try and do things like the movies with their child. It gives parents a safe venue to practice skills with their child that they can then eventually transfer to an integrated setting. Just because it’s an autism event doesn’t mean parents are letting their child away with “inappropriate” behaviour.

Lori – of course you’re quite right that many families use “autism only” events as a jumping off place.. and a first attempt at public engagement. And yes, they’re very helpful and positive for many people.

What bugs is is that they’re rarely conceived of as a first step in a process. rather, they’re presented as the one and only attempt of a museum, theater, etc., to include people with autism.

It’s certainly better than nothing. But for a lot of people, it should really be a first step – not the last step.

Lisa

I’d love to set the bar high, but my son does not comply — he is not high functioning and has few motivators. I feel that punishment is not appropriate. I’m not sure how to teach him and his teachers are equally confused how to deal with a noncompliant child.

am right there with you.

What often worked best for us was moving the bar around a lot rather than setting it… learning when to push and when not to push our expectations often seemed like a full-time job. I think that sometimes children with autism don’t let us know (in the same ways that NT children do) when we are holding them back and not pushing them enough. I think also that they often let us know when we’re pushing them too hard, but we do find it difficult to interpret the many possible causes of meltdowns… so often it takes us some time to figure out when we’ve set our expectations a little too high.

So, for us, what worked was always being prepared to change our expectations and to take time to develop many Plan b’s, c’s, d’s, e’s….

That was very well put Mary. I think many of us struggle to know where that bar is, and it’s ever changing.

Because each is an individual, there really cant be a set bar.

I pre-date the Rehab Act, ADA revision, IDEA, et cetera, having been born in the 1960s.

I was and remain partially paralyzed. My parents still did not allow any excuses for not trying any given activity. I wasn’t great at some things, but I was in Little League, Cub Scouts, and school band.

My initial diagnosis of retardation didn’t sway my parents, instead they pushed harder. When I complained, I’m sure that by today’s standards my parents were “mean” or something. I read excerpts from “The Tiger Mother” this week and was reminded of my parents.

My parents were not college educated, not from the middle class, but they never suggested I was going to do anything except succeed. Even when teachers told them I couldn’t do something, they argued and eventually made me take up the task at home.

My brain injury and paralysis are still quite real. They still pose challenges for me. But, I also still do things I wasn’t supposed to even try.

Would my “retardation” and later “autism” have been crippling without the push from my parents? I don’t know. I can’t answer that. I do know that now when I say I can’t it is my wife who glares at me and says, “Yes, you can and you will.”

My parents wouldn’t expect me to run a marathon. They knew when some things were never going to be possible. But they also assumed it never hurts to try something once.

I also don’t think that parents always control where the bar is at any given point in time either. Society, in part, determines that.

For example, if I understand things, IDEA and FAPE legislation has both responded to and created an expectation that the goal for every child should be as close to full inclusion in the “normal” system as possible. Yet, in a previous thread, Lisa, you mentioned how it isn’t the children with the greatest amount of need who necessarily get the best services out of this legislation, but the children whose parents hire the best lawyers. Does that mean that parents who don’t hire the best lawyer are guilty of setting the bar too low? (i.e. not fighting hard enough for their child’s rightful place in society?). Some in society might judge them that way, but it really wouldn’t be right, would it? Conversely, if parents spend their retirement funds paying lawyers to fight to get “stuff” into a child’s IEP that the child is unlikely to ever accomplish, are they setting the bar too high?

When Temple Grandin’s parents or Helen Keller’s parents were setting the bar for their children, they were for much of it, “soliciting favors” from those dedicated teachers they found. This worked in part because Temple and Helen were “rare” individuals; that is, the teachers didn’t have to anticipate that 1 in every 100 of the students (or far more if one includes all different forms of disability) would require the same degree of attention in order to succeed. In some respects, it’s tougher to get a favor out of “the system” today… for a lot of different reasons.

Malia – no, of course I don’t think the parents with the best lawyers are setting the highest goals for their kids! That’d be a bit silly.

My point is that, as it makes sense and is appropriate, we can offer our children opportunities to do for themselves and experience the wider world – and even sometimes fail and try again.

If we feel our child is being under-challenged in school, we can certainly meet with teachers and administrators to discuss the issue and make changes. In addition (or instead), we can provide our children with enrichment opportunities that build on their strengths and interests.

IMO, setting the bar high enough is not just a matter of academics. It’s about believing that our child can and will grow and build skills – and that when we fill every need before our child notices that they HAVE a need, we may be standing in the way of their growth.

Lisa

Lisa, you also mention another example of where society may be starting to set a collective bar for people with autism. That is, in how it conceives of various special programs for people with autism. As they become more numerous, it may indeed become more difficult for some parents to use them as a jumping off point to full inclusion in those same activities as there may be a tendency to start to recommend restricting people with autism to activities designed to cater to some conception of their “collective individual” needs. This, of course, is a bit of an oxymoron, paradox, conumdrum, etc.

I agree, Lisa… and honest I did understand the context you were presenting this article. However, I feel that some of the seeming disagreement among parents comes from the different contexts in which we put things and many things influence this, not just our child’s level of functioning. Upper middle-class parents of higher functioning children are more likely to put this whole situation into a context of additional exposure to life’s extras, but poorer parents for whom those extras may not even exist for their NT children may be more inclined to put in into the context of basic academic educational needs.

If, for example, they feel that the school system is under-challenging their child, have met repeatedly with teachers to try to get a little more out of them in the way of challenging their child, and met with resistance from the school in this respect (possibly because the school’s budget is overtaxed, etc.) then they could conceivably interpret this as saying that if they don’t hire that lawyer and let the school get away with it, they are setting the bar for their child too low… when in reality, society’s interpretation of where the bar should be set keeps changing in front of them.

Malia – you’re probably right on both counts… ARGH!

I think it VERY likely that organizations will (and do) create “autism only” programs and then feel that they have done more than enough to provide access and inclusion.

And you’re most likely right that people will misinterpret my point, even though I tried hard to include examples of ways in which the bar could be raised in non-academic ways… AND was clear in saying that every child will have a different level of ability/disability.

Sigh…

So, in the interests of trying to bring both sides to the middle… I think all us parents should also try to cut ourselves and each other some slack. When a person suggests that not doing enough can hold a child back, it doesn’t mean that they’re arbitrarily implying that they should be pushed too hard either. Lisa’s point are, IMO, quite valid. There have been times when I have held my child back out of fear. There have also been times when I’ve pushed him too far and created social issues and problems for him in the course of doing so.

It’s all a matter of balancing an ever moving bar… which is a difficult task at best. I think we all continuing question ourselves whether we’re pushing too much or too little or getting it just right… and sometimes we do get it just right, too.

As I read your post, Lisa, I couldn’t help letting a prolonged “oooooooh” audibly escape. In my opinion, you’ve taken a huge step recently in your definition of the role of autism parent and I find it rather thrilling.

Yes, as you say, ” we live in a culture which allows children to do less than they’re able to do… and rewards children for mediocre efforts.” So very true, or at least I think so, too.

This is not to say children with autism and other differences don’t need help and patience and accommodations to reach their potential, small steps at a time– it just means we need to keep that bar and our expectations high if we want them to stand a chance of reaching that potential.

Methinks some here are taking the term “raising the bar” a bit too literally. It’s just a visual phrase for keeping expectations high.

(continued)

“Raising the bar” doesn’t just apply to children who are considered “high functioning.” I have personally seen children who started out with pretty severe autism rise against all odds to reach goals some would never think possible, thanks to the determination of parents.

Your recent behind-the-scenes story of Tom’s success in music reminded me of a boy here whom I’ve known since he was in 3rd grade, barely verbal, severely learning disabled, and prone to hideous tantrums. His mother somehow found a college student who taught him how to play the drums. Even though this boy could barely communicate, he could play like a rock star, by the time he was in 4th grade. Instead of being known as the boy with autism, he was known and respected by peers and adults alike as the kid who could really play those drums.

In middle school, with the help of a 1:1 aide, he played with the band– which was a step down musically for him but taught him the social and functional skills (following directions, waiting his turn, listening for cues) he would need to participate in events. Now a junior in high school he plays with their award winning drumline and has traveled with them and the regular marching band to various competitions, intra- and interstate, even across the nation last summer to march in a 4th of July parade.

As a small child my own son was verbal, but couldn’t communicate, and spent a good deal of time spinning in circles, banging his head, and tantruming. At 15 he’s a top student who plans to become a neurosurgeon.

These successes didn’t happen overnight, and they didn’t happen due to expensive therapies, medications, alternative treatments, or prayer. The successes are the result of hard work, invested parenting, creative problem solving, sheer determination and, as you say, the unwillingness “to accept a disability as an excuse for poor behavior, laziness or self-indulgence.”

Zusia, I also agree with what you’re saying in principle; however, the problem I see with strong finishing statements like in your last paragraph is that it creates an expectation that ALL that it takes to generate that sort of success is an unwillingness to accept the disability… which isn’t true either, is it? Sometimes it takes much more than that… and, in some cases, it takes backing off and accepting some things the child just can’t do. It’s a difficult balancing act.

Also, that final statement runs the risk of putting off certain aspects of autism onto just laziness on the child’s part or just “being difficult.” For example, in one class, my son was having fits every day. His teacher would tell me that he was “just being difficult, resistive, non-compliant.” The issue, as we discovered later, was a buzzing fluorescent light above his desk… that was quite simply making it impossible for him to concentrate in that class… due directly to his hearing sensitivities related to his autism. As a result, his teachers and I could have “pushed” him all we wanted to do better in that class… and NEVER succeeded. Until we fixed the light, we were truly beating his head and ours against a brick wall.

Oops – became distracted. “quite literally” in the above should be “metaphorically.” We were not actually beating his head against a brick wall, but his hearing sensitivities were quite probably causing him to experience some physical pain in his head.

Oops again – “truly” should be “metaphorically”… I should quit now – I’m not even typing what I think I am (Tired – It’s been a rather difficult Monday so far).

There’s no doubt that the bar should be adjusted based on individual abilities and challenges. That’s the case for everyone: autistic or NT, child or adult.

But I stand by my point that setting the bar on the ground does our kids a disservice. I am of the opinion that EVERY kid has the potential to grow and build skills – and I further feel that it’s worth our while as parents to seek out settings and situations in which our kids can thrive.

Harking back to Harold’s comment, I see that he often blogs about wonderful walks he takes with his son, Conor, who is severely autistic… clearly both Harold and Conor are good walkers, and enjoy the experience. Why not expand on that type of success with different types of hikes in different settings, setting the bar a little higher each time?

Who knows: maybe a young man like Conor could, in the long run, wind up climbing a mountain!

Lisa

Malia– you’re mincing words to make your own point. Neither Lisa nor I said “unwillingness to accept a disability” but rather “unwillingness to accept a disability as an excuse for poor behavior, laziness or self-indulgence.”

We also never suggested that small steps and accommodations aren’t needed. In fact, the small steps and accommodations are what helps a child overcome their difficulties.

Let me give you an example related to what you describe happened in your son’s classroom. We dealt with a similar situation with the light issue and instead of “fixing the light” I taught my son to deal with it, because in the real world, lights can’t always be fixed.

How did I know he could deal with it? Because that’s how I learned. When I was a child I ran screaming from popping balloons and fireworks and buzzing insects. Radio static made me want to rip off my skin. I thought everyone could see fluorescent lights flickering and hear them buzz.

My parents taught me the behavioral expectations and expected that I’d rise to them. Public misbehavior was unacceptable. Yes, it took years longer than my peers– I was 30 before it finally dawned on me that buzzing insects could be ignored– but nobody ever lowered the bar just because I had sensitivities. I was taught to look around and see how others were acting and match my behavior to the highest example. This is what I’ve taught my son. (continued in next post)

(continued)

It’s what I teach kids in school, too. When they arrive at middle school still clasping their ears whenever noise increases, I tell them to knock it off. I tell them they no longer need to do that and to look around and see that nobody else reacts that way. They look, they listen, they learn.

I once worked with a nonverbal high schooler with autism and cerebral palsy who walked with his hands curled up at his chest. He may have had to do this as a small child but as a tall adolescent it was throwing off his balance. I taught him to walk like his typical peers, with his arms at his side, in a stride. Every time I saw him I had to order “Hands down!” At first he looked surprised, and a little hurt, but within a short time he began grinning when I said it, and was so happy to comply. He was proud at himself for learning a new skill.

This story illustrates the difference in setting expectations according to skill level, which is all about the individual child.

I’m not going to mince words with you since I think a statement that implies “unwillingness to accept a disability as an excuse for poor behavior, laziness or self-indulgence” equates to what I said when behaviors related to the disability are often “out-of-hand” attributed to “laziness or self-indulgence.” In the example I gave, my son was accused of being lazy, non-compliant (i.e. a trait similar to self-indulgence in the eyes of some).

I do agree that lights can’t always be fixed; but that doesn’t mean that the best solution is always “pushing” the child to adapt. Sometimes taking a step back and fixing the environment a little is needed first… to get the situation back in hand… before instruction in coping can commence.

PS: My son was eventually taught to tolerate the buzzing of fluorescent lights, although that’s no excuse either for places letting them go for months until they burn out.

Perhaps it should also be noted that a buzzing fluorescent light is an indicator of a malfunctioning ballast in the light (i.e. the light was truly broken). Sometimes things in need of repair in schools aren’t repaired promptly. Budgets sometimes play a role in this and other times, it’s just a “lazy” repairperson.

What I’m saying is that people with disabilities don’t forfeit any rights everyone else has to “complain” about problems with their environment. They often just lack the means to communicate their issues effectively to the rest of us.

Sometimes in teaching a child to tolerate things, particularly a disabled child who cannot communicate well, we wind up teaching them to expect to tolerate abuse. Like I’ve been saying – it’s a difficult balancing act.

Actually, Malia, when we change the environment what we’re doing is validating the child’s reaction and reinforcing their negative behavior. I’m not saying there are times when changing the environment isn’t the best option, but please understand that unless there is subsequent training and role playing, bad habits will form.

Zusia, please see my addendum to comment above. When something gets broken where you work and you call up building maintenance to have it repaired, do you expect them to just tell you to “suck it up?” or do you expect them to try their best to fix it? Does fixing it arbitrarily re-enforce your complaint in noting that it was broken… or does it just solve the issue?

I agree that subsequent teaching is needed, but sometimes all that’s needed is devising and teaching effective ways to communicate an issue. That is, we have to discern what is and what isn’t willful misbehavior from lack of means of communication. So many times, I’ve seen the first most readily assumed and the second not even taken into account. For months, my son was treated as though he was just being difficult, when in reality he had a valid issue with a broken light in his environment. If he had been able to just tell his teacher that the light was broken and irritating him, things would have gone much more smoothly… but he didn’t (at that time at least).

Here’s another example – My son had difficulty staying in his seat on the school bus, so the transportation department insisted that he use a seatbelt. I had no issue at all with complying with this even though he was the only child on the bus being required to wear one. However, shortly after, my son’s behavior on the school deteriorated markedly. He began throwing fits. It got so bad, his aid had to forcibly carry him onto the bus each afternoon… and she was sporting bruises from the physical resistance my son was doing. I was told that he was being spoiled about being strapped to his seat and to persist… and so we did, for a couple of months. Then, quite by accident, a child revealed that a little girl sitting behind my son was intentionally tormenting him by pulling on the seatbelt strap (effectively choking him). He did not have the verbal skills to tell us this, but she most certainly had the social skills to know when to stop (before the bus driver got down the aisle to investigate my son’s screaming) and to seem very innocent indeed. Merely telling my son to tolerate her “bad behavior” was, IMO, exceedingly unfair to him; but since she wouldn’t stop the behavior and was crafty enough to continue to get away with it, our only option was to drive our son personally to and from school (and I forfeited work hours in order to do that). However, this did not in any way reinforce “acting up” in a moving vehicle. He willing wore the seatbelt in the car – since no one was sitting behind him choking him with it.

Malia, you’re mixing apples with oranges. In the case of your son on the bus, you’re right, it wasn’t a seatbelt issue, it was a bothersome peer issue. What I’m talking about is when it’s really and truly a seatbelt issue, and we coddle the child about it.

Certainly there are times these things are difficult to sort out, and it’s always a good idea to investigate and look for the causes of a certain behavior. Still, it doesn’t hurt to teach any child how to tolerate the misbehavior of others. You may need to do this in steps, but it’s still a life skill that can be role played.

p.s. When building maintenance tells us they’ll get there when they can, we automatically know to suck it up. We’re not allowed to whine about the leaky roof or the broken toilet. We’re expected to be resourceful and manage until they can fix the problem.

Having a sense of humor about these things is very helpful, and that’s what I try to cultivate in my kids and my students. When I tell them to “Buck up” I do it with good humor and a big smile. It does work.

That said, I agree that driving a child to school is a good option, until the child is old enough to learn the skill. That’s because all behavior on bus is so difficult to moderate.

Just so you know, autistics can hear buzzing even when the light does not need to be fixed. That’s what makes it so unusual. All fluorescent lights buzz to us.

I agree with some of what Harold said. For a child affected severely with autism, that bar would be much different than that of a different child. The last thing on my mind at one point was a museum or theater. I also disagree with the idea that a child could achieve more than what they’re capable of if only that bar was set higher. That gives the impression someone isn’t working hard enough. I think back in the day the expectations were lower, when institutions were the only intervention. For as long as my child has been alive, the expectation is creating a high achiever regardless of their autism is ever present. Everyone is well aware children with autism can progress, however every parents knows you cant push that child to toilet train. Every parent knows, or should, some kids never will potty train, some will always have academic, social and sensory issues. And most if not all parents are exposed to the idea of recovery, so many push the bar to that, and that’s what they expect.
I think we live in a world where the bar is often set far too high and the child with autism has a very difficult time dealing with everyone else’s expectations and progress from them. The idea of a teacher allowing a child to avoid a social or sensory situation is a teacher I would want. Pushing the bar higher for that child easily can result in a horrible experience not only for the child with autism, but for their peers as well regardless of tools and resources. My son needs the teacher who knows when not to force him into those situations when he’s not ready.

Sandy – as often happens, our experiences have been very different.

Our son was bundled out of gym, art, music and science the moment he was uncomfortable (or the aide was uncomfortable) – as a result, it took us a very long time to help him learn to ENJOY art, sports and science.

IMO, scaffolding inclusion would have been the right choice. NOT forcing inclusion, but taking it step by step.

And, as you note, you have ALWAYS had high expectations for your child. You are, perhaps, unusual.

Lisa

Sandy, who said “a child could achieve more than what they’re capable of if only that bar was set higher.” That isn’t even logical– if a child is capable, then they’re capable.

I think what some of us are saying is that a child can achieve the most when the bar is higher than their current level suggests.

Again, nobody is suggesting “forcing” a child when he’s not ready. The idea is to work toward the higher goals, a step at a time, rather than making excuses. The problem isn’t allowing a child to avoid a social or sensory situation. The problem is not teaching the child how to manage those social or sensory situations while you’re making accommodations. See the difference?

IMO there’ more to it, Zusia.

It’s also standing back and allowing a child to try and fail and try again – rather than rushing in to save the day (assuming that failing is safe, and the child is not on the brink of a tantrum).

It’s also providing a child (or teen, or adult) with the opportunities and resources they need to actually do what they can do well (as opposed to focusing only on what they CAN’T do).

Lisa

Yes, good points both, Lisa.

Malia– I sort of missed your point when replying to your question about how does calling building maintenance reinforce inappropriate behavior. Let’s look at it this way:

If every time my classroom leaks I call building maintenance and scream, they might indeed put other people’s needs aside and come running to help me, but that would only reinforce my bad behavior. It would do nothing to teach me how to properly respond or how to deal with the problem myself. Instead, it would reinforce that screaming gets attention.

Lisa, great article =)

I am a parent who constantly changes where the so-called bar resides. I have two boys with autism – our eldest is 6 and with autism whilst our youngest is 4 with ADHD/HFA. Yep, one at either end of the autism spectrum

The “Bar” always has to be changed in our house and this is how I feel it should be for children within the autism spectrum. This is because what works one day not might necessarily work again – there always has to be back up plans that you can fall back upon.

I expect a lot from my boys – I expect them to be well behaved and courteous to others, I expect them to do as they are told and I expect them to participate in activities. I feel that by expecting so much from the boys from world go (19 months old for Tyson, 9 months old for Taj) that both boys have been able to function a lot better than before.

They must be as they are both going into an Education Support Setting combined with Mainstream Schooling. What Tyson’s classmates couldn’t handle, he could. And he was able to help the other students to calm down =D

Okay, they do expect a lot from me in return and I am fine with that as that is something that I have risen the “Bar” for myself. How can I expect my children to do so well if I don’t expect the same amount (and more) from myself?

Roxanne– thank you for articulating what has been swimming in my head all day, after reading these posts. We, as parents, have to raise our own bars as well. Very important point.

I’m not saying to not go ahead and eventually teach the skills… I’m saying sometimes it takes a step back to properly assess a situation. It isn’t always due to willful misbehavior… or laziness… or self-indulgence, either. I’m also saying that, as outsiders to what our children are experiencing, our perception of what is going on with them, especially with those who have language difficulties, is very often not inaccurate.

The other students in my son’s classroom didn’t notice the buzzing light, not because they were NT, but because they weren’t the ones sitting right under it. For two whole months, no one thought that my son’s resistance to getting on the bus was associated with a girl essentially torturing him during the trip. We didn’t set out to do him an injustice… but we did. I often wonder how much of that little girl’s bad bullying behavior we inadvertently reinforced by allowing her to get away with it. There was never any penalty to her… from her point of view, my son was even the one eventually booted off the bus.

My son did not suffer skill-wise because a broken light that was irritating him was fixed. Since he was better able to concentrate, his teacher was better able to teach him to speak better… so he didn’t have to throw fits to get his point across. He CAN tolerate buzzing fluorescent lights now… to a point… and when he reaches the end of his tolerance, he doesn’t throw a fit. Sometimes he asks nicely to have the light fixed. Heck, sometimes he’ll even get a new bulb and ballast and replace it himself without bothering anyone else about it at all.

I like to think that because we eventually showed my son some compassion and understanding… we taught him a little about showing compassion and understanding. Perhaps that is why he so willingly fixes his own lights now… or why he brings me tea when I’m feeling blue… you think?

Malia – that’s great that your son is able to help himself in those situations, that he is able to show compassion and empathy to others, including you, is a MAJOR feat – you have done a fantastic job =D

You can only learn from your mistakes and you can only do the best that you can. I, myself, grew up with an ASD which went undiagnosed (Mum knew about it but simply put her head in the sand). I am lucky in that I can actually remember all the confusion I experienced when I was their age. This helps me look a situations in a different light.

I’m a weird one though – I don’t accept help from the services in my local area as I feel that they aren’t suitable. I WANT my children to participate with NT children so that way they can model their behaviour. Sometimes bad stuff comes through (ever been called an F*ing B by your 5 yr old?) but that is easy enough to iron out. . .

It’s really up to the parents to decide what is best for their child at that particular point in time

Malia– of course it’s important to stand back and assess a situation. I’ve said that over and over as have others. That was never a point of contention.

And you’re right, it’s wrong for adults to generalize about laziness and willful behavior– you should hear me rant about that at school.

You can show understanding and compassion, provide support, encouragement, accommodations, all the while keeping the bar raised high. That’s the point.

We have something in common– my son makes me tea, too. Good sons we have.

So, now that we’re back to agreeing with each other – let’s go back to my original comment to you and reassass the situation. I said, precisely:

“Zusia, I also agree with what you’re saying in principle; however, the problem I see with strong finishing statements like in your last paragraph is that it creates an expectation that ALL that it takes to generate that sort of success is an unwillingness to accept the disability… which isn’t true either, is it? Sometimes it takes much more than that… and, in some cases, it takes backing off and accepting some things the child just can’t do. It’s a difficult balancing act.”

Which means:

(a) I agree with you in principle… and I said as much right at the outset.
(b) Please now note that there were elipses after the word “disability.” in my original comment, which is used to indicate missing material and invites the read to continue on to fill in some blanks on their own. Your response was to blatantly accuse me of “mincing words to prove my point”… starting this exchange.
(c) My statement was about “strong finishing statements” (not about teaching techniques) being misunderstood in a manner that can create a false expectation that all undesireable behaviors of people with disabilties would be poor behavior due to laziness or self-indulgence.
(d) Furthermore, both my conclusions utilized the word “sometimes” meaning that they would apply some of the time, but not all of the time.
(e) My subsequent personal examples were intended only to illustrate two situations where undesireable behaviors were not due to “laziness or self-indulgence” and that were originally misunderstood and attributed to “self-indulgence” because my son lacked communication skills (i.e. he was essentially non-verbal at that point in time). In that respect, they were not “apples and oranges.”

To tell the truth, I think that setting the bar appropriately high, and then providing support and encouragement, is the right thing for everyone – kids and adults, with or without disabilities.

That doesn’t mean everyone will be able to leap over every bar – and there are many reasons why that might be the case. Of course, laziness or lack of incentive might be among them, but so might competing priorities, physical or psychological barriers, or sheer bad luck.

I often cringe when I hear from some well-meaning cheerleader-type that “you can be anything you want to be!” Of course that’s sheer BS: you CAN’T become a Broadway performer or an astronaut through sheer hard work and dedication, no matter how much you want it. So much depends on being at the right place at the right time, connections, etc.

Bringing it back to autism: the right teacher, setting, developmental level, weather, physical state and so forth all play into individual achievements. Some of those things are out of our control. But none of that means (to me) that we should throw up our hands and say “oh well, that’s just the way it is,” and give up on raising the bar.

Even if we don’t make it to Broadway, we may make it to a starring role in regional theater. And even if a child with autism never becomes “indistinguishable” (which is a questionable goal anyway), he or she may well succeed in reaching “unreachable” goals.

Lisa

Absolutely. “setting the bar high” does not mean being punitive, or forcing them into the same mold, or even, that setting the bar high means it looks the same for every child with autism.

I do think parents do their children a disservice to accommodate for everything every time. That’s not to say accommodations are bad. But sometimes, in the safety of the home, when things are going well, it seems wise to challenge. To push, not to torture, but to allow for growth.

Again, I agree Lisa, with BOTH you and Harold. While the tone of Harold’s post was, IMO, overly critical, he does make a valid point: “There are serious issues concerning the appropriate learning environment and understanding how to help lower functioning autistic children”… One of those issues is ability to communicate; and although it’s actually an inaccuracy, when generalizations about autism are made, they frequently include the idea that children who can’t communicate are “lower functioning.”

So, one of those “serious issues” that I believe Harold alludes to is how we often fail to adequately consider (i.e. accept) what it is the child can and simply cannot communicate to us to help us accurately ascertain the “cause” of their poor behavior. I liked your blog article and said so, but I can also understand how Harold found room to object to it even though, as you noted, he does have positive expectations for his own child and does likely set and reset “the bar” continually with respect to how his child is learning and at what level he’s capable of learning at that particular point in time.

Parents of “lower functioning” autistic children are often “accused” of giving into their disabled child’s whims too soon or too easily or not having high expectations for them (i.e. setting the bar too low). There are also times when they just feel as thought they’re being “accused” of giving into…………..

While we shouldn’t arbitrarily excuse poor behavior caused by laziness or self-indulgence in anyone (disabled or not), we should at least be allowed to feel it’s OK to try to be understanding of poor behavior caused by other issues without being assessed as being a parent who arbitrarily won’t set the bar high enough for their child to learn.

As an aside, I want to anwer the statement zusia made “I agree that driving a child to school is a good option, until the child is old enough to learn the skill. That’s because all behavior on bus is so difficult to moderate.”

She seems to assume that my son’s difficulty in sitting on the bus was because he wasn’t old enough to learn the skill. My son actually was already quite able to both sit in his seat on a bus and to wear seat belt before all this “poor behavior” on his part started. As it turned out, it was determined that he was leaving his seat and walking around on the bus directly as a result of one “social solution” I gave him to respond to the bullies in his life.

I had told him that, rather than allowing a bully to coerce him into hitting them, he should respond to a bully’s taunts by “just walking away.” Guess what, he was leaving his seat on the bus to avoid that same little girl… who eventually “won” by getting my son “booted off the bus.”

Everyone was so concerned about re-enforcing some imagine “self-indulgent” behavior that they completely failed to curtail her bullying. Years later, it was her mom’s misfounded opinion that my son was “uncontrollable on a bus” that very nearly prevented him from being allowed to accompanying his band on a field trip. I had great difficulty convincing the school that he had indeed learned a great deal in those years between the two incidents.

Lisa said it best in this comment toward the end of the comment thread:

“I think that setting the bar appropriately high, and then providing support and encouragement, is the right thing for everyone – kids and adults, with or without disabilities.”

If we can’t agree on that simple idea, then the rest of this conversation (if that’s what it is) is meaningless.

Thanks again Lisa for your insightful comments and thought provoking posts. I personally learn a lot – and there are times ofcourse that the things you say are based on your own experiences with Tom. While my own experiences with my sister will not replicate yours with your son ( obviously!), there is always some aspect that I can apply to my situation. Thanks for getting us all thinking. Something else that I have noted though is the way different people react to these discussions, and it gives me a warped sense of relief. As I have become more and more involved in my sister’s life, in the world of Autism and the world of advocacy for adults on the spectrum, my relationship with a number of people has taken a turn for the worse. I get such strong oppositional reactions from some people that I have seriously started doubting my own ability to maintain cordial relationships with others. I feel like a lot of the things I say are being misinterpreted by people I interact with. I swear though that my intention is never to ” attack” others though it often ends up looking like that. Do you see what I mean about getting a warped sense of relief in the knowledge that I am not alone?

Aparna – I think there is a general tendency in society for discourse to be interpreted more harshly… and not just related to autism. I often hear harsh discourse on the bus, on the street, in grocery stores, etc. I know my son finds it very difficult to determine just how “street” to make his speech to “fit in” with his peers around here without being disrespectful of all the adults in his life (who have been the bigger influence in teaching him his verbal language through therapy).

For myself, I also often feel caught in a nexus – seeming to some to be “arguing” with people whom I would say I agree with on many different levels. Sometimes, I also feel I’m misunderstanding them and I care about what they think so I want to understand them correctly. Sometimes, I think, my inquires just to clarify how I’m understanding them get interpreted as confrontations when they really aren’t intended to be.

Just to echo what Malia is saying: as an About.com Health Guide, I’m on a list serve with all the other health guides (there are about 65 of us). In recent weeks, many have received some really nasty, mean-spirited posts… so it’s not just us.

Not sure what’s going on in the world at this moment… many it’s astrological?! :->

That’s sad to hear Lisa. When I wrote my post about my son having difficulty with determining how “street” his verbal language should become, I was thinking about a post Roxanne made earlier on this thread about a 5-year-old calling their mom nasty, nasty things. I here people using such names all over the place, both with and without the strong “intent” that used to be assumed went along with the words…. and I know my son, with the language impairments associated with his diagnosis, struggles with the idea that in some circles, his friends use such words all the time and in others, the practice is completely unacceptable.

At 5, my son could, for the most part, only echo what was said directly to him, so to have the experience Roxanne had, I would have had to have said the words myself to him first…whew… saved by echolalia, perhaps. :}

I’m trying to decipher in my own mind how one would go about setting a fair/resonable bar if such a language issue is present. It is certainly possible that some 5-year-olds with autism would intentionly view their parents with such resentment that they would resort to such words. In that case, certainly discipline would be called for. But what if, it was just a form of delayed echolalia… i.e. just mindlessly repeating something heard earlier in the day on a public playground?… Almost certainly, just throwing up one’s hands would leave the child no means of eventually learning that such language was unacceptable in at least still in most social circles… another conundrum, perhaps?

Malia – I live in Perth, Western Australia. That kind of language is present just about EVERYWHERE here. Pretty soon, we are moving to Darwin in the Northern Territory – it’s second nature to use “street” language up there.

But that doesn’t mean that we are complacent about such language. Both boys know when they are done wrong as the reaction that comes from us is certainly one of displeasure, it doesn’t happen often. Throwing up ones hands, with any child, is just asking for problems later on down the track. ALL children need boundaries, especially children with autism.

We are big on behaviour charts, they can help fix/iron out a lot of difficulties. Also, the child can see what needs to be done in order to get what they want. I have several charts on the go at once and this helps a lot. Bad language isn’t a problem most of the time because that is classed as being naughty, which means a great big X for that day – my rule is, two crosses and that’s it, no fun activity.

Harsh? Yes, but it works. . . For us, anyway

I agree Roxanne about all children needing boundaries. I’m not arguing, honest! From your comment about “harsh” at the end, I really think you have misunderstood me.

What I’m puzzling over is IF a child whose language use is purely echolaic (which my son had at age 5) were to call a parent a name. Motivating that child to stop the behavior just simply wouldn’t work. I realize that not all children with ASDs are echolaic, so this may not be what you are experiencing.

Just in case some readers are unfamiliar with the term: “Echolalia is the AUTOMATIC repetition of vocalizations made by another person.” (from Wikipedia, emphasis added). The word “automatic” is key to this definition – the child has no intent, understanding or deliberate control over what comes out. It is much like a language tic.

When he was 5, my son could not say “mom” and he could not ask for anything (like a glass of milk)… He was, by definition, non-verbal. However, he did frequently repeat entire movies after just watching them, complete with very precise sound effects. He did NOT know the meanings of what he was saying and he wasn’t intentionally saying anything. Motivating him to stop the behavior (no matter what form that motivator took) would have had NO EFFECT… since he had no conscious control over it in the first place.

In his case, his echolalia diminished on its own as his speech therapy progressed. Maybe a speech therapist could fill in how this works, but it seemed to me that as his brain began to generate meaningful, intentional language, it had less time available to generate meaningless echolalia. However, my son’s echolalia has not completely disappeared… very, very occasionally still, he does repeat things that have been said to him… without being at all aware that he’s doing it. This puts him at risk of unintentionally calling anyone a name for no reason… if what he had just heard was someone else using that term.

My reference to harsh language being used everywhere these days doesn’t mean that I think the intentional use of it is becoming acceptable or that I wouldn’t attempt to stop my child’s intentional use of it. What I’m saying is that a person with echolalia is more likely today to echo very bad language simply because more of it is heard on the street than when my son was small.

The other point about my son having difficulty deciding in which circles to use which language is a different problem. He’s a young person and young people use worse language and we old folks do. Society in general has evolved in that direction. Another aspect of my son’s autism was difficulty in applying skills learned in one environment to a different situation in a different environment. For example, if he learned some math at school, he had difficulty repeated that skill at home. This has some real-life ramifications for his use of different styles of language in different circles.

So, please Roxanne, don’t think that I’m criticizing anything you’ve done or are doing with your son. Motivation and other disciplinary tools work beautifully in the right circumstances. Not using these same tools in some circumstances does not equate “throwing up one’s hands” in order to allow the behavior to continue. Perhaps my mistake was in not fully explaining the various ways children CONSCIOUSLY lip off:

(a) The child may genuinely resent the parent
(b) The child may momentarily resent soemthing the parents has done.
(c) The child may be consciously copying the behavior of another (with or without understanding the meaning of what they are saying)
(d) The child may believe the words they are using mean something different than they do or the words may even have different meanings in different environments.

In my one post, I only listed the first (most extreme) as an example… and I apologize for that.

However, NONE of the above are “echolalia” since NONE of these are AUTOMATIC.

Hope this helps clarify my musings,
Malia

I’ve been doing some reading on echolalia online and do have to further correct myself. There are functional forms of echolalia in which the child must have some conscious idea of what they are saying – so, IMM, it’s more like copying language with a purpose. My son’s initial echolalia was more like a tic. Something in his nervous system may have been soothed by it, but he was not conciously aware of himself doing it… and still isn’t on the rare occasions it occurs.

Oops typo – s/b “… and young people use worse language than we old folks do.” (This is also a rough generalization based on an average… Some “old folks” do use bad language and some young people don’t.)

Our son’s echolalia seemed to be purposeful: he’d use bits and pieces from video scripts that were semi-appropriate in given situations. Occasionally, they were (and are) SO appropriate that only his sister knows they’re lifted from TV!

Lisa

Thinking about it, my son did eventually develop some purposeful echolalia and maybe he still uses some of that, too. I don’t watch enough movies to know whether he’s pulling sentences from them to answer questions or whether he’s making up his own. Most of the time everything appears to be in context now. He does seem to “rehearse language” under his breath from time to time (which, I’m learning, is a purposeful form of echolalia).

When he was just 5, things were different. Questions to him were met with silence… , but he could go off in a room by himself and recite an entire movie he had just watched top to bottom, all parts and roles, and including sound effects. In no way did he seem to be aware that he was “talking” – i.e. enunciating words. We took it as an encouraging sign that he would someday develop language. That is, it meant he had the physical capabilities to make words with his mouth, vocal chords, etc.

I should also say that it did not appear as though my son was having some sort of psychotic episode at these times nor did it appear as though he was engaged in imaginitive play (as if he was acting out the movie). He could be appropriately engaged with a toy while all of this talk was going on or even engaged with us in a non-verbal way. He just did not appear to be aware that he was saying anything.

I found an article about a stroke patient that sounds similar.

http://neuro.psychiatryonline.org/cgi/content/full/14/3/356

When my son “rehearses language” that is exactly what it sounds like. He might say a phrase under his breath once or twice and then say it out loud to another person… presumeably once he’s satisfied that the tone and inflection in his voice are “correct.” It could also be that he’s just slowly bringing up the volume until what he’s saying can be heard Early on, he had trouble self-regulating the volume of his speech and this practice, I think, could also be a residual technique he learned for doing that.

I am always amazed at how many articles are written about children with autism, and hardly anything about the adult with autism..It is like once a child reaches adulthood, they are no longer important in societys eye..

I look after a autistic adult, she is low functioning and when I started working with her, I found it very difficult because there was nothing to guide me on her and her ways of thinking.. When I first started working with her, she was not even diagnosed with autism, but the way she was acting to the enviroment around her and other things books I had read got me thinking that she seemed autistic and I was able to get her diagnosed.

But my main point is this, where are all the books and articles for adults who face austistic challenges?

Joe, I think some of it has to do with how the “market” for such books is interpreted. I think many books on autism are sold to parents of newly diagnosed children and/or sold to teachers and aides working with ASD children in the education system… so, more books are written targeting those age groups.

I agree that there is a need for some literature in the area you describe, as well as for some self-help literature for high-functioning adults with autism… particularly helping them get through things like job interviews (an area my son finds particularly stressful). The current plethora of books on this topic, however, are difficult for him to read and don’t seem to offer him much in the way of really helpful advice.

I’m following this thread with great interest. @ 2 my child was diagnosed as “severe to moderate” ASD. There were no local programs for toddlers/preschoolers geared to him – he wasn’t high enough functioning so he was placed in a EI/CI program to meet Child Find and IDEA requirements. I wasn’t happy about this.

@ 4 he was decertified – he no longer met the requirements. After the initial heartbreaking diagnosis, I researched and incorporated as many ideas as I could that wouldn’t hurt him long term.

@6 he was re-certified. PDD-NOS. I was told by his school that he “couldn’t” learn. In fact, he can learn just fine; he learns differently than other children and needs accommodations. Our district has yet to fully comprehend section 504 or IDEA legislation. Yet through all this our local Autism Organization had no programs for him because he “wasn’t autistic enough”. (actual words)

@14 we’re still hearing from the schools how he “can’t learn”(actual words) because he has yet to be assigned to a teacher who can teach in a style where he can learn. Yet on yearly common assessments he scores in the mid 80’s. AND we hear how he shouldn’t really be receiving special service and/or accommodations because “he’s not really autistic, he doesn’t look autistic and he doesn’t act autistic enough”. (actual words)

What happens to my child as he approaches adulthood? He’s not severely impaired yet he is not high enough functioning to “fit in” without support. I’ve given my son as many opportunities and experiences as I can. Some successful, others not so much. He is expected to act and dress a certain way in public settings but that may be relaxed in private. He can mimic the best in acceptable social behavior but is not always verbal. I await the day when the shift is away from autism being considered a spectrum disorder and the emphasis is on autisms – singularly separate forms of autism.

Joe and Malia, there is actually quite a bit written for and about adults with autism. In fact, I have whole sections on the subject on this site; you can find quite a few at http://autism.about.com/od/adultsonthespectrum/Adults_and_Autism.htm.

I’ve also written reviews of books for/by/about adults with autism, but you’d have to look through my “resources” section to find them. Check out amazon and you’ll find scads!

Lisa

Heather – I think that goes for everyone – kids and adults, autistic or not!

Lisa

My wife and I are grandparents looking after a non verbal autistic boy who also has klippel feil sydrome. Because of the deformities associated with this sydrome he simply doesnt look normal.However after 16 years we have got used of other kids staring. Our chief concern is that at 16yrs he cannot read or write. I have invested in a computer program called clicker 5 and have supplied a computer and touchscreen for use in his special needs classroom [the school has no funds for this kind of IT]. what I am finding difficult is to know just where to put the bar so to speak. His aural understanding of words and phrases is probably about that of an 8 year old but his recognition of the written word appears around 2-3 year old. Has anyone out there had success in teaching a non verbal autistic to read and write on a computer using Clicker 5 or other such program?

Mel

I’m not having any luck finding a site where I can help my adult son meet a woman with similar interests and capabilities for companionship. All the “Dating Sites” are for ( normal) people, my son is so sweet and smart and he struggles with the fact that he can’t just meet a nice girl because of his social skills. I have half a mind to start a site myself to help people just like my son.