I first wrote this blog post back in October 2013. Due to the mysterious magic of google searches, it is my most popular blog post. I thought I would update it this morning, five years later.
My son has high functioning autism or Level 1 autism or whatever they’re calling it these days. Because researchers now think that there are many different kinds of autism, my kid’s variety is characterized by speech and social deficits, average to superior IQ, hyperlexia, some anxiety and sensory issues, no obsessions, no stimming.
He’s only a sophomore in small public high school right now. His story isn’t over yet. He still has two more years before graduation, and we face major decisions about his future. Sill, in those five years, he has made so much progress. He’s now completely out of special ed for math, and he participates in after school activities with the typical kids. Even in the past year, he has made stunning changes. We’re now considering future plans for him that were inconceivable when I first wrote this blog post.
Because this blog post brings in so many random parents desperate for answers, I thought I would spend the next thirty minutes writing up what worked for us. Now, I’m not a hundred percent sure that our methods for dealing with my kid’s autism are responsible for these changes. Maybe simple brain maturity would have gotten us to the same point. Maybe these methods only work for my particular kid. I can’t be certain, but just the same, I’ll share.
One of the best things that we did was cough up the $5,000 to get a complete evaluation of his strengths and weaknesses at a major university hospital. For two days, they gave him various IQ tests and speech evaluations, as we watched behind a two-way mirror. At the end of it, I ended up with a thirty page report that showed that he had a very high IQ and very poor social skills. We knew this already, but now we had a document that we could wave at the school district to make sure that they didn’t place him in a program with kids with lower intellectual or behavioral issues.
Keeping my kid in the mainstream world as much as possible has been very, very important. Being around typical kids forces him to work harder. When he’s in a program aimed at disabled kids, he acts like a disabled kid. The expectations are low to non-existent. He is allowed to drift into his own world. He doesn’t have role models.
Ian’s default is to live in his own brain. It’s easy there. Being around other people is hard. He has to be forced to do things that are hard for him. So, I make him do a lot of hard things, like marching band, offering frequent bribes and encouragement.
When he gets home from school at 3:40, he would be perfectly happy to retreat to the comforts of a computer until bedtime. He doesn’t have friends or free school sports activities to keep him in the world of people. So, I sign him for up two hours of people activities every day — Kumon, swim lessons, extra music classes, computer classes. Anything that I can find to keep him busy.
It’s not cheap. We’ve decided to pull out all the stops in his teenage years and spend whatever is necessary to keep him in the Land of People. We probably spend $1,000 per month on all those activities. In the past, we couldn’t afford a lot of outside therapies for him, and I have some regrets about all that, because it’s best to do it when their brains are young and malleable. But some say that the teenage brain is just as malleable as a toddler’s brain, so it’s not the end of the world that we missed the toddler brain window.
I no longer expect that the public school system alone will educate him or provide for all his needs. I fought against this mentality for so long, because schools SHOULD be doing all this. But giving up this fight was necessary in order to get Ian what he needs and to keep my own sanity. One person alone cannot possibly force a school system to do the right thing. Sure, I fight when I can, but I have no expectations for success.
I frequently change our after school activities. I once read a study that found that the benefits of a new therapist or a program fade after six months, so I switch often. It’s also important to keep kids from autism from ever slipping into the comfortable routines that they crave. Routines are the devil.
I network with other parents like crazy. I volunteer a ton of hours to the special needs community in town, so that I meet other parents who can tell me about new local activities. I set up a facebook page for parents in town, which now has almost 300 members.
I focus on strengths, not just the weaknesses. Because Ian is great at music and computers, we take lots of lessons in those areas. In addition to learning how to play a new Bach piece on the keyboard, he gets speech and social skills from interacting with the music teacher. The back and forth with the teacher about his fingering or the pace of the music is more useful that the formal, scripted social skills lessons that we take with speech therapists.
Schools want to group all special ed kids together in the same room, because it’s cheaper than providing each kid with an individual education. Ian now has a one-on-one aide who helps him in mainstream settings. This aide helps him in the lunch room and gym, which are chaotic, unstructured environments, and in classes when he runs across problems due his lingering issues with language comprehension. She has been a life saver.
Ian goes with me everywhere. I take him on chores to the supermarket. I take him when I check in on my parents. He goes with us to museums. I take him to dinners with my friends. Sure, I sometimes let him play on his cellphone rather than endure the chitchat of me and my friends, but he’s there with us.
We support all interests and use them to get him out of the house, among people, and to introduce him to new experiences. Ian loves music and theater. So, we coughed up an unspeakable amount of money to see the full day performance of Harry Potter on Broadway last week. We take him to the ballet and free concerts at the local church.
The university hospital found that Ian’s IQ was especially high in the area of pattern recognition. He was in the 99th percentile or something for that skill. Pattern recognition is a key part of computer programming, where there happens to be really good jobs for people like Ian. So, we sent him to a very expensive computer programming summer camp.
Learning and growth happen when he is exposed to new experiences, when there are all high expectations, and when he gets out of his comfort zone. I guess it’s true for all kids, but I think that typical kids seek out those new experiences independently and have more opportunities to be exposed to those growth moments. Ian needs a nudge to leave his brain and needs us to expose him to new things.
Money helps out a lot, so does the huge support team behind him. In addition to me doing the driving and networking, Steve and my mom take over when I get burned out. I hesitate to write this all down, because we have so many privileges that others don’t have. This recipe for success isn’t available to everyone. And that is just plain wrong. Still, it is what it is and that’s a battle for another day.
If you want to read more about my kid and our family, start here.
October 15, 2013
My son has high functioning autism. His neurologist gave him the diagnosis of Asperger’s when he was five, because during the exam, he took my bottle of water, turned it on its side, and began reading the small print on the label. She said that he had Asperger’s, because he was smart.
But he wasn’t and isn’t a typical Asperger’s kid. Kids with Aspergers tend to be highly verbal. They’ll talk your ears off about trains or dinosaurs or some other obsession de jour. Ian’s speech is slow, but his spatial and decoding skills are off the charts. Some say that kids like Ian are a whole different branch of autism, called hyperlexia, but the research on hyperlexia is very weak. In fact, the research on all high functioning forms of autism is so weak that they’ve gotten rid of the Asperger’s label all together now. Now, it’s all just autism.
Thanks to reforms in the 1970s, the public school system is obligated to educate my son and all the kids with the many varients of autism. With the rise in autism rates, this has become a very expensive proposition. One in 35 boys in New Jersey has an autistic spectrum disorder. The burden has fallen on local districts to cover these expenses, because the federal government never provided the promised funding for special education. With the price for autistic education as much as $100,000 per child, this creates for very unhappy local politics. At our local special education PTA, the parents practice talking points for when a neighbor accuses them of stealing their children’s education money.
Local schools do not have the resources to teach kids with severe cognitive and behavior problems. Those kids are sent to private schools around the state. The quality of education that those children receive is highly dependent on the financial resources of the town and the legal representation of those parents. Here in New Jersey, there is a move to establish county-wide autism schools to reduce the flow of public money to private schools. They are building a school like that just down the road from me. Based on parental feedback about other country-run autism services, I’m not optimistic about the quality of this school. This school will be for parents who can’t afford good lawyers.
While local schools simply cannot provide the resources for kids with middle and low functioning autism, they have established classrooms for higher functioning autism. Theoretically, these classrooms can target autism’s special brand of needs – poor attention, need for repetition and routine, and language deficits. A staff person trained in ABA therapy can help them with OCD and other behavior problems. They can be mainstreamed for strengths and have individual instruction in their weak areas.
Parents like these local classrooms, because their kids can remain in the community and not be shipped miles away. The kids can interact with typical kids on the playground. They say it is better to be the lowest functioning kid in a typical school, than the highest functioning kid in an autism school.
School districts like these classrooms, because it keeps the town money in the town and because it’s much cheaper than private schools.
The problem with these classrooms is size. There aren’t very many kids with high functioning autism in any town. Also, there is a very high level of variation within the broad category of high functioning autism. Right now, Ian, who does a 5th grade math curriculum, is in a classroom with kids who are struggling with basic math facts. There are only four other kids in the class. Teachers and aides vastly outnumber the kids in the room.
There is also no consensus about the emphasis of these classrooms. Ian’s old transition classroom pushed academics. He worked on math worksheets and reading workbooks from 9 to 3 every day. His new school puts the emphasis on social skills and blending with the mainstream kids. There is little oversight and no standards.
Autism education is in its infancy. Sadly, costs, rather than research, are driving this bus. I would like to see somebody do a “best practices” study of these classrooms for HFA. What is best AND most efficient way to educate a child with HFA?
UPDATE: Two recent articles about hyperlexia.
UPDATE2: Good books about autism:
- Look Me in the Eye: My Life with Asperger’s
- The Autistic Brain: Helping Different Kinds of Minds Succeed
- NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
Apt. 11d 
“What is best AND most efficient way to educate a child with HFA?”
The profile I’m familiar with of highly capable/poor social interaction (paired with measured high abilities tests on standardized/IQ tests — my kids go to a school where a cognitive testing score is required for attendance, so the kids I know are those types of kids). In our school, the kids (and I’m guessing here, ’cause I’m not privy to diagnoses) seem to do OK in a regular classroom with accommodations for executive functioning skills (electronic devices to store lectures/info, more interaction between parents/teachers than the norm), small class sizes, and receptive classmates (in a classroom where accommodation of your peers quirks is considered a requirement and is preached by the faculty).
But the kids I know are the ones who may not even have labels anymore (or IEP plans) though they had Asperger’s diagnosis as children (in the couple of cases where I actually do know the diagnosis) and who are functioning at the same academic level as the kids in their classrooms (though they may need some supports in place to function at those levels).
Group education is, ultimately, for children who fit into a category of some sort or another (with potential accommodation of individual needs). Will there be a group for some of these kids? And if not, what is the best method to accommodate them into whatever group they’d fit best into?
In theory, a classroom with a small number of kids and lots of teachers and aides should be able to provide an individual plan for each kid, shouldn’t they? If there’s an adult for each child, why can’t each child do exactly the academic work that is right for them? Is it a lack of teacher training in content? a lack of lesson plans? The classroom seems like it *could* be homeschooling with a range of ages of kids.
Do you have any suggestions about how people start educating themselves about possible best practices?
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“In theory, a classroom with a small number of kids and lots of teachers and aides should be able to provide an individual plan for each kid, shouldn’t they? If there’s an adult for each child, why can’t each child do exactly the academic work that is right for them?”
Exactly.
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Oh, you would surprised at how badly it can be done, even with all those grown ups in the room.
Actually, learning one-on-one is concidered a more restrictive environment than learning in a large or small group. Ideally, kids should be grouped with kids who are on the same level as themselves and then all do the same assignments together.
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I guess I can see that the school might not see the model as acceptable, since their goal (and, I guess potentially parental goals are to try to educate each student in a classroom that meets their academic needs). But, what would it require to make it happen? There would need to be a lesson plan for each student and someone to work with the child on each plan. In homeschooling, I think parents rely on the kids working fairly independently, which might not be an accurate assumption in the classroom.
And, alternatively, what is required to make the logistics work? to have the students switch between this classroom and others. Does it get easier when there is subject based scheduling? Our school starts subject specialists in the 4th grade (i.e. 4th graders walk from classroom to classroom to each of their subjects). They have no “homeroom” but do have a class where they are taught some organizational skills. Would that setup be a better one?
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Hi Laura,
My 14 yr old son is asperger’s syndrome and I would like to get more information from you pls. I have him in a small private school fearing that he might get bullied in public schools. Pls email me
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A kid is considered high functioning if they have an average IQ. So, anywhere in the 90-110 range. The problem is that autistic IQ is very hard to measure. There’s a big controvery whether they should use the WISC which a verbal based test or another kind (the name escapes me) that emphasizes non-verbal and spatial abilities. Some kids with HFA are in the gifted range for one thing, and then in the sub-normal range for other things. Most kids with HFA would not get into your kids’ special gifted school.
Yes, there’s a huge problem with teacher training. A special education license doesn’t necessarily help a teacher who has to give instruction on algebra or biology.
One of the biggest challenges with these transition classes is organization and scheduling. Kid A gets science with a mainstream teacher at 9, then is back in the classroom for math at 10, and then goes to a speech therapist at 11, but the science teacher moved his class to 11, so speech has to get moved back, and so on. It gets a little chaotic. If a teacher isn’t a good manager, then the system falls apart.
There are hundreds of these transition classes in NJ, but very little sharing of information. Each classroom is an island. It would be good if some researcher took the system apart and informed each of these little towns what others are doing. In public policy, it’s called a “best practices” report.
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I apologize, I was not able to find a way to just leave a plain comment, so I chose to reply.
My 9 year old son has been diagnosed with high functioning autism combined with ADHD and severe sensory Processing disfunction. I wish that your son and my son could get together. They sound very similar. I have spent his whole life trying to research his diagnoses so I may be able to understand him more and raise him correctly. At this moment in time, I am trying to find extracurricular activities in our area for him to join, so that he can focus on people his age and also to understand that he will not always “win”. I was shocked to learn that he was nominated this year for student council vice president. He was excited to run. But ultimately he lost. That devastated him. He lost by 11 votes!! He is very popular, but horrible at social skills. So I do not know how he got so popular. I am thinking about karate, but he always tells that he doesn’t want to do anything. His therapist says she thinks it is because he feels it is too hard.
Oh, sorry, my son is also diagnosed with hyperlexia also. He has been reading since he could speak. Sure he started speaking late in his life, but it felt like both came hand and hand. The doctors were shocked at the words he could read, however his comprehension is not as superior. Last year, I got him tested for giftedness. He was off the charts. The psych was considering sending his scores to mensa. He loves the solar system and will be stuck on different aspects of it. Everything he does goes back to that. His art, his stories, everything.
I also wanted to take a moment to thank you for sharing. I have found a lot of blog posts about parents discussing their autistic children, but none that I feel like I really relate to. High functioning autism is so different. And also has it’s own set of challenges, such as the anxiety and depression that these children suffer with. 😕
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Thanks for your note! Sounds like you’re doing a great job. I agree that we need more resources for kids on the higher end of the spectrum. Maybe I’ll write something along these lines soon.
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Your description of the transition classroom reminded me a bit like the HS ELL (English Language Learning) class a friend was hired to teach a few years ago. She left the job after a year because the role she was expected to play wasn’t what she wanted to do. She didn’t realize when she accepted the job, but the expectation was that she would teach mini lessons in each subject area with her students, providing extra language learning support. So, she was supposed to cover the science, math, history, english lesson in the HS class for her students.
She was an English/History teacher by training who had worked extensively with Spanish speaking ELL students. But, this role of ELL coordinator wasn’t one she felt ready to assume, which as you pointed out required extensive coordination with other teachers as well as an ability to make those lessons (in different subjects) accessible to her ELL students (who spoke multiple different languages). She was happy to teach the subjects she loved and knew well to children with limited english proficiency, but not to teach other subjects, and not to coordinate as extensively (the management aspect of the work).
I thought the model was interesting, but she wasn’t the right teacher for it, and, I’m not sure if the right kind of teacher would be easy to find. The teacher would need to be a well-organized manager (interacting with teachers who may not have planned all that far ahead themselves) and with an ability to teach children functioning at many different levels.
I wonder if there’s been any research on the ELL model?
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The Ravens Progressive Matrices (group test) and the Naglieri Nonverbal Abilities Test (individual) are the two non-verbal tests people sometimes refer to. It’s also possible to use sub components of the WISC and Stanford Binet tests separately (though our school does not, and requires all the children to meet a threshold based on all the subscores).
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My autistic son just started kindergarten in a regular classroom with a 1:1 aide and he is struggling. He is super verbal and very smart, but the school environment causes him enormous stress and anxiety, and leads to major behavior problems in the classroom. A typical comment from his aide is that he had trouble with hitting other children but was doing third grade math that day. I don’t know that there are many other good classroom options for him since our school district is not huge. He would probably thrive in a smaller classroom, but I also think it’s essential that he learn from interacting with his typically developing peers. I’ve heard from a number of parents of autistic children that homeschooling has been perfect for their kids and I think it may be in our future at some point. Schools push for a high level of conformity, but ASD kids can’t be forced into a one-size-fits-all approach.
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I know this is a hot button issue for Laura and in the past have not said anything. But, if your son is hitting other children, he can’t be in that classroom. He just can’t. It is not fair to the other children to be hit or to fear being hit (or my experience, pinched.) If the aid can’t stop it, you need to find another option.
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I should clarify – I think this is the exception not the rule (hitting/pinching/other violent behavior). If your kid is the target it is a nightmare.
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Kids with behavior problems that involve hurting themselves or others are typically not in these transition classes. Behavior problems in a transition classroom include OCD type of shouting or putting one’s head on the desk if the teacher is boring. Ian picks apart his t-shirt. If you ask him a dumb question, he’ll say, “you know what it is!” Not appropriate, but not major. Ian once got punched in the back of the head by a kid in one his classes; that kid was kicked out the school immediately.
Behavior problems are caused by anxiety. I once saw a totally calm classroom go apeshit, because the teacher was inexperienced and two troublesome kids entered the classroom. If the classroom is bad, then it’s best for your kid to get him out of there. If the teacher is too limited to figure out how to properly educate your child, then you need to go to a better school. Classroom aides are underpaid and inexperienced. Don’t expect them to do anything. If the anxiety is caused by internal issues, then a simple anti-anxiety med can help a lot. Special schools have ABA and OT therapists that specialize in helping a kid overcome stress related to their environment.
There are plenty of public schools that offer the middle route between an autism school and a public school. If you aren’t in a network of special ed parents, then you have to hire an education consultant to tell you what to do. None of this information is on the Internet, and the school district wont’ tell you anything.
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I would love to discuss the issue — of the impact on the classroom, and what impacts can be accommodated with best practices and which can’t (hitting is a subset of potential conflicts). But, only if we can do it without hitting anyone’s buttons.
I’ll give an alternative view that some degree of hitting in K is not a bar in our school — kids who hit, are given opportunities to modify their behavior, though I don’t know through how many incidents. I’m opposed to zero tolerance policies and though I think hitting is special I don’t think it trumps all behavior in the classroom.
In fact, I once hit someone in the 9th grade (a boy, taunting me, and I was becoming sick, so was emotionally unstable). Back in those days, I didn’t get in trouble at all, even though it was and should be a big deal. But, I shouldn’t have had severe consequences given the particulars of that incident (it was atypical of me, the boy wasn’t upset — since his goal was probably to get me to pay attention to him, he was much bigger than me, . . . ). Because I was a “good” kid, no one really had to justify not getting me in trouble. In this day and age, they would have, and couldn’t if zero tolerance policies were in place. I made the wrong choice, but suspending me wouldn’t have been the right response. Of course, it was very atypical behavior for me.
If hitting were “typical” and wasn’t being managed, and was creating an atmosphere of fear for the other children, it is a classroom issue that needs to be resolved. I don’t think all hitting fits in that category, especially for Kindergartners, who can become physical even if they are typically developing. My kids have been targets (though not repeatedly) and shoulder it well, emotionally. The incidents (few in number) don’t create a huge burden and they are able to empathize. They have friends who have hit them and are largely able to dismiss the event as something that happen when the child lost their temper and not a reflection of them or something that creates fright.
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This is a perennial problem. Every year, when we think we have the matter licked, a new issue complicates matters. Last year they started taking the ASD kids out to the buses early to minimize conflicts and confusion. Fine for the kids who were in the ASD classroom during the final period – a disaster for Autistic Youngest who was integrated that period in Accounting. She ended up doing rather badly in the course largely because of this administrative disruption (and, sadly, we weren’t in a position to pick her up ourselves from school last year).
This year, we required that she not be integrated during period six. This means that she’s going to take six years to complete her high school studies, not five as we’d originally thought. *sigh* All because the bus consortium and the school made this one little change to the schedules.
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Gotta get back to pesto making, but behavior problems aren’t a sensitive topic for me. Ian’s biggest problem is that he bites holes in his t-shirts. But I do have a lot of sympathy for ALL special ed kids, even those who have behavior problems. If we continue this conversation, just keep in mind that 1. they are just kids, 2. they aren’t bad, 3. the problem is usually with the adults in the room, and 4. with the right adults in the room, most problems will be solved.
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I also have sympathy for special ed kids. But, Kim is talking about a child who is in a regular classroom and hitting other kids. Whether that is caused by stress or something else doesn’t really matter – he can’t be in the regular classroom when he is hitting other kids. (She says typical comment) My sympathy stops when the special ed child is violent towards my kid. I went through that issue – pinching to point of bruises over and over and over and it wasn’t until we got lawyers involved that we got the school to act and got it stopped. (Unfortunately by removing the child from the classroom.) Your (generic your) child’s needs for social development do not trump my child’s needs for physical safety.
It isn’t typical, but it does happen. It was a nightmare. You would not believe the accusations we endured about how we hated the special ed child etc. No, we didn’t. We just weren’t willing to allow our child to be bruised.
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Let’s keep in mind that 99.9% special ed kids do not harm others.
Tulip, it is terrible that your child was physically harmed, and that the school was not able to properly care for the needs of the special ed child. But I feel like your anger is directed at the family of the special needs kid, when the real failure lies with the school district. Help for the special ed child should have been set up on Day 1. There are millions of things that can be done to help a kid with severe anxiety. But all those steps cost money, and school districts prefer to wait until parents start complaining and bring in lawyers. Maybe the best thing for the child was to put him in an alternative classroom with more attention. That costs a lot of money. Schools kick that can down the road for as long as possible.
So, be mad. You should be mad. But direct the anger at the school, not the kid or the parents.
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I need some advice. My son is a 8 yr old high functioning who is attended a private school for children with autism. My son is very social however the kids with him in his class are low functioning compared to him. he goes to a regular school district classroom once a week but is facing academic challenges just bc the teachers in his private school don’t stress as much on academics. I am stuck in this dilemma. What school setting will be best for him? Any suggestions? Ann
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How about asking to have your question posted on the front page?
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How do I do that. Very new to these forums
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Ann, only I can post info on this blog.
I don’t know your son or the options in your area, so I can’t give specific recommendations.
1) If your son is in a classroom/school with lower functioning children, he can’t stay there. You need to tell your case manager, “My son has the right to an individual education in the least restrictive environment. You need to find a new placement for him now.” Use those words.
2) If you are not in a network of other special ed parents, then you should consider hiring an education advocate. I haven’t had great luck with lawyers, but others love ’em.
3) Ask to look at the regular special ed class in the school. If your son doesn’t have behavior problems and is high functioning, this could be the right place for him.
4) Find all the local special ed parents and start networking like crazy. Find other kids like your son.
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