Teens with High Functioning Autism and School - Problems and Promise

I have seen a significant trend in my practice, teens with high functioning autism unable to attend school due to intense anxiety.

The problem of children with autism who are unable to cope with school and develop agoraphobic  type symptoms has long been around, but the increased numbers of highly intelligent, often with a "superpower" talented young people who are unable to participate in their educations and life in general is tragic.

Schools are not being flexible and creative in addressing this.  They insist on the old paradigm of highly structured behavioral model programs that simply don't work for these kids any longer.  Many of them reject, sometimes with vehemence, the idea of the stucture of Applied Behavior Analysis (ABA) being practiced on them any longer.  They "age out" in a way.

But there is hope, in the form of a study of a school in England that developed a program based on empathy, kindness, and most of all, flexibility. (a link to the article is at the bottom of the page)   

The school is proving that the humanization of behavior interventions is still evolving.

The profound positive effect of ABA for serious maladaptive behaviors is clear.  Lives have literally been saved and ABA has provided a path to autonomy for countless children.

However, without significant changes, I do not see evidence in my daily interactions with parents that ABA is working for their kids. 

It's time to look at programs like the one featured in this episode and make similar models available here.

Link to article: https://pubmed.ncbi.nlm.nih.gov/37860824/

In the transcript section I've included a copy of the outline I wrote for the episode.

Thank you for listening!

Transcript

Today I'd like to talk about teens with high functioning autism and how they're faring in our educational system as it stands now and to report on hopeful developments in the education field to address their issues effectively. 

Based on my own experience with parents and from reading research over the past few years, I believe the portrait of what I will be painting is an accurate description of what many of these teen’s face. 

Who specifically are we talking about? These are teens and young adults that are 14 to 20, averaged to very high cognition, 120 plus IQ is not unusual. They're generally visual spatial learners and for that refer to Dr. Temple Grandin who is autistic and she describes her interactions with the world as seeing in pictures which is also a book that she wrote about being a visual learner. 

These students usually have language processing deficits that lead to an inefficient use of language. There are generally social skills deficits and that's of course relating related to the processing issues. 

These are the kind of kids who rarely had friends come over when they were young and they remain socially isolated throughout their school careers. 

They get along better with older or younger people. There are attendance problems at school, often serious behavior issues in elementary school. 

Neurodivergent individuals have a higher than baseline sexual identity issues. There is research to support this, but more studies are needed. 

These young adults often have a super strength like an enhanced memory or being able to see patterns where others can't. There may be a strength in the area of verbal comprehension and expression that actually complicates the social skills issues because these are kids that are very articulate and knowledgeable but usually about their favorite topic. 

There may or may not be dyslexia between 20 and 40 percent are. They may also have ADHD, again a significant proportion do. 

Educationally the problem often starts in preschool. I have seen many instances of kids being asked not to return to private preschools and even in public classrooms the staff often are not educated on how to work with these kids. 

In elementary school these students are often at or above grade level and general knowledge. As noted they may have reading problems but also may be far ahead of their peers in reading skills. Complications can develop from either situation. 

By middle school things like social anxiety, sometimes school refusal, social problems at school, organizational issues, these sorts of issues start to become more apparent. Many cases recently that I've seen have these similar symptoms. Depression, isolation, verging sometimes on agoraphobia and leading to severe anxiety in any school setting. There are a lot of school avoidance for somatic symptoms. Again we talked about the sexual identity issues. 

There is often a rejection of any structure-based PBS positive behavior support or ABA applied behavior analysis program. This is really an interesting one because behaviors are such a consistent feature of these kids' experiences at school and I'm interested in the ABA has that effect of actually turning them off to the whole idea of that structure. 

Now this is totally anecdotal on my part, but parents tell me there is a certain point where their students look at these programs that are highly structured and say no I don't think that's who I am. This is damaging me. The anecdotal part is becoming more difficult to isolate in my experience. These issues seem to be pretty common. 

There's lots of information online now about autistic people that have gone through ABA programs that are now regretting the fact that they did so and seeing it as a type of abuse. I don't see it that way in terms of young children at least. The evidence over the years is just overwhelming that ABA literally has saved lives in terms of things like self-injury for people who used the head bang for instance before ABA became a widespread practice. 

However there seems to be a point where the person realizes that's not who they are. There is a rejection of a lot of structure and rules. There is usually a deep distrust of school and school staff. With language processing issues that are present there is difficulty in expressing this discomfort. 

Of course there's the anxiety. The anxiety is intense in many cases, and it leads to the fear of place the fear of settings the fear of going to school. I had a client with a child who went to school and sat under their desk every day. They could not leave that area because they were so anxious. 

Now let's look at the effect on these teens’ life. They can become more depressed and more isolated often refusing to go to public places. The depression deepens and the danger of agoraphobia becomes more acute. I have seen this in my career with the students and families I've worked with where the student did become basically the old term I guess is shut in. These are young adults so that's really tough to see. 

Schools in my area have not been responsive. The standard course of treatment so to speak is specialized programs on school site or non-public schools. The problem with each of these is that they depend on a structured model of behavior interventions that are designed to teach the student to act differently than they're behaving now. This is the classic structure of positive behavior support and applied behavior analysis. 

This worked in elementary schools as we talked about for many of these children but the efficacy of that behavior interventions based on this structured model becomes less effective over time as I mentioned. It's kind of like the age out of this type of system and as I said many of them just roundly reject anyone practicing on them. 

The education system has not gotten this. Educators insist on the model for younger children and apply it to teens and is often with disastrous results. 

Okay now let's switch gears and look at an encouraging study that was conducted in England about a program that addresses this issue. I've put a link to the article in the show notes. It turns out that a successful program's philosophy for educating these children consists of a large dose of empathy and flexibility along with making instruction relevant to their lives. 

I've known for years that children with high functioning autism often crave kindness and understanding. In fact I developed a program in a school district where I was a coordinator from middle and high schoolers that was based on the idea of having a place to go on campus, a sanctuary, a place where they could be comfortable and supported. 

So let's look at this study in the article. It's called "He's Shouting So Loud but Nobody's Hearing Him" and is a study of autistic pupil’s experiences of school nonattendance and exclusion. The article uses a lot of parent, student and staff commentary so I'll mix that in with the description. 

The article says "Parents and teachers often describe their autistic children and students as academic, very bright, phenomenally intelligent and very articulate but nevertheless feel that they were just too overloaded in mainstream in multiple ways. Young people spoke of the sensory overload, how classrooms were very big, the lights were too bright which made it difficult to filter out background noise and deal with distractions. Students said so I basically mentally logged out. 

They also repeatedly described the social overload, how the sheer number of people was just intimidating in part because quote "they didn't get on with a lot of people and we were bullied and in part because I didn't know what they were going on about." 

These social struggles were exacerbated by the desire to fit in to be just like them. They also felt overloaded academically especially with homework which is extremely stressful and often led to a lot of sanctions leading to a lot of distress. Many young people attributed their hate for homework to a straight separation between home and school. Quote "in year seven I tried to do homework, but I was having like breakdowns and crying every other day. It was not a happy time." One student said. 

This was compounded further by reports that school staff didn't understand what to do with the students. Young people described how they often benefited from more support and help, a bit more one-on-one. 

Anxiety was described as a common thread for autistic children's negative experiences of school. One teacher portrayed as students’ anxiety is very tangible saying "it's almost like you reach out and touch it." Interviewees describe how their own or their children's anxiety was building and building. Prolonged experiences of anxiety eventually resulted in their children being desperately unhappy and eventually shutting down. One parent shared "it became too much for him, and he stayed in his bed all day every day." 

Professionals felt these crises were often preventable particularly understanding that if they're behaving in a certain way one's saying is not necessarily that they can help it it's that their anxiety is getting in the way. Parents agreed "if this anxiety has managed the violence and aggression and all those things are completely nullified." 

The article goes on "for all our young people and parents these issues eventually came to a head where the young person was either formally excluded from school or "decided to leave. The distress of being excluded extended to families. A parent reported "it has been really difficult for us as a family." 

Parents reported "having to giving having to give up work because it was impossible for me to maintain a job and how the exclusion process had negative effects on my own mental and physical health. I cried. I had shingles every single year because I was so stressed out about it." 

Some parents reported also a sense of guilt saying, "I either tried to force him to go to school when he clearly was utterly terrified or because you're responsible for this naughty child you're obviously not parenting them properly." This parent further described how the family also became very quickly excluded from relationships with other parents and so it's a very socially isolating experience. 

One key reason why this process was drawn out because alternative options were few and far between. Professionals agreed with their sentiments why they felt that their role about working with the family and empowering the families and being proactive rather than reactive. In reality there were often asked to support the process a bit late because settings don't always flag up until there's a real problem according to one. 

Despite professional’s concern about not being able to intervene earlier because it reaches or before it reaches a crisis point they were adamant that there was no capacity to be more supportive. 

Alright let's now switch gears and talk about the kind of school that was created for these students and what the results were. 

Following are the experience of these students in an alternative setting and what that setting emphasizes is empathy, kindness, flexibility, relevance and also one-to-one support for all students. 

Here the authors describe the school, “At the time of this interview most young people had been accessing education in this alternative provision for at least one year while others had only recently transitioned”. Here's how the staff talk about it, “It's relaxed but structured. The small school space and less people meant that there were less distractions and less opportunity for students to make the wrong choices, and staff can actually cater more to what the student needs”. 

Young people spoke repeatedly how everyone was very relaxed, and the staff are friendly. Parents agree that their children's new placements were more flexible. “They don't mind too much as the as a day off like oh that's a wobble move on”. 

Parents went further to suggest that it was more than simply one-to-one support. It was also the way in which staff tailor child's and their learning needs to suit their particular abilities. “They still follow the curriculum but do it in a way that engages the child rather than this is a set out the way we've got to do it. It's about knowing a child's needs”. 

Teachers explained that we try to create timetables around the students' preferences, “They've got to do maths and English as a non-negotiable”. 

Young people experienced this personalized approach as greater freedom in the classroom. Young people also felt that their teachers understood their differences. “They've obviously got the understanding of autism and all the things that as well you know it's not just autism. There's ADHD. There's a lot of different things”. 

A teacher explained, “before I thought autism was something I had to learn to manage to help but now I see it's about making my lessons. Making sure my lessons are relevant”. 

From the teacher's perspective, “every single day after school we run through every child we have, and we talk through any positives or negatives for the day and on the back of that we'll develop strategies. In so doing you sort of feel always supported. If there's something that I'm struggling with I can always go to a colleague, and they'll give me some ideas”.

Critically, young people emphasized the importance of strong trusting relationships with their teachers, “It's just like everyone cares”. Young people also highlighted how teachers go out of their way to help. 

From the parents’ perspective they describe how their autistic children are quite alert of how people perceive them. One parent said, “having teachers that want to be there and will give everything to help that child I think that's the key. As a result young people feel safe and looked after in their new environment. I like the fact that it makes you feel at home”.

The level of care had a positive effect on parents too as in that they were, “relaxed and not worried at all”. Teachers describe their students in positive terms, “He's a really lovely kid”, and emphasize how young people enjoy working with teachers that they can develop a relationship with and who understands their needs. 

Teachers describe having a really strong relationship with parents who they contact on a weekly basis preferably by telephone. “The idea that is that we have quite a strong and open and trusting relationship”. 

Now let's look at the transition piece to adulthood and see how the program addresses that. 

One thing I will say that's an aside and this is not from the article is that transition to adulthood obviously for the children that we're talking about is exceptionally difficult with all the issues that they're facing. 

But there are also issues with the type of program that is described in the article. There are certainly way more positives than negatives though. One parent summed it up, “astounding really he has a future now whereas before there is no future for him”. 

But this is from the teacher's perspective. They understood why parents want their children to stay as long as possible even when it's not necessarily in the child's best interest. They discussed their many attempts to start the transition as early as possible, “so that we're not completely cutting the apron strings”, one said. 

While some professionals caution that the mainly one-to-one teaching is not ideal as the kids are missing out on all that social experience teachers were cognizant about not wrapping autistic kids up in such a protective bubble. “So noting that we have got to keep them with us but then gradually sort of push them further away from us so that they actually go off and fly on their own”. 

What these teachers are saying is that yes this is a very good protective safe bubble for these students to be in but that they need to start that transition to adulthood. So this is the time but with that support that they have the chances of a successful transition are certainly much greater. 

Now as a parent you probably think of your child in the system you are in, your school district and other helping agencies. You have a child who fits the profile we are discussing now. How much support can you expect? 

In my geographic area, at least, there are no public schools that fit the criteria of the school in England or a class like that. There are two private schools that more or less follow this model but one of them focuses on learning disabilities. There is one school that philosophically at least fits the description we see in the article, but it is very expensive. 

Let's talk about money for a second. The program in the article has one-to-one support for each child. Here in the U.S. this would entail a teacher who oversees a number of students, and the one-to-ones would be paraprofessionals or classroom assistants. 

How could districts afford to pay for one-to-one assistance for every child in a program like this? Let's look at the present placement these kids typically end up in which are non-public schools also called NPSs. If you think about NPS placement expenses and when I was a special education director and retired 11 years ago the average cost for an NPS was around $50,000 per student plus there were extra costs for things like additional therapy, transportation and so on. 

I'm pretty certain that most areas of the country have significant populations of students like the ones we're discussing at least in urban and suburban areas. A program like the one we are discussing would be a realistic endeavor for a school district or a group of school districts. The cost for a student quickly decreases with the addition of more students. It becomes a simple matter of economy of scale. 

For example the rent on a building, the school secretary, a counselor, etc. obviously becomes less expensive per position with more students. 

We know the outline of a good program from the article. I've also put thought into what an ideal program might look like at least a partial idea. 

A program like this would not be housed in a school setting. These students have an aversion to being in school most of the time so I'm kind of thinking like an office park where you have the office in front and there's kind of a warehouse in the back. 

There'd be flexible starting times because most of these students have sleep issues, so if they're coming in at noon that's fine if that's what the plan is. There should be counseling on site, there should also be mentoring on site and the person who is there one to one with that student would be the obvious choice for that. Research is indicating that mentoring is really powerful for students with autism. 

Staff should have specific training in autism and social and emotional needs so that they're committed to working with the students with the knowledge needed to provide the empathy and understanding needed for the job. 

Teachers work with students to best determine learning styles so they can determine how instruction is based. For example as most of these students are visual spatial learners and if a particular student is interested in becoming an electrician for example a significant amount of the core curriculum can be taught using hands-on and relevant lessons related to electricity or becoming an electrician. Math and science in particular could well lend themselves to this. 

A student interested in art or music could be addressed by including a student's talents even in subjects that a lot of these kids don't like. A literature unit could feature a person who reflects what the student's interests are. 

I would envision the warehouse section of the program to feature a number of projects that are student interest driven. 

There need to be community-based activities. The students, educators themselves should have regular outings into the community. 

The way I think of this is that there are 18- to 22-year-old programs for students who didn't graduate from high school with a diploma and those students are usually have more interfering disabilities and what the purpose of those programs is to teach students life skills. Things like being able to get around the community, take public transportation, be able to live independently, be able to cook, have a bank account and so on. 

If you think about it for a minute when we're looking at our subject students that have been so traumatized over the years, they really need a reintegration into society because of the agoraphobic type aspects of this and other less dramatic ways that kids often avoid being in society. 

So they need to be out in the community doing just regular things, shopping for necessities, taking public transportation, accessing recreational and entertainment opportunities and so on. 

There shouldn't be traditional grades in this program. There should be mastery-based assessments only that are based on the students learning style. 

And above all I think everyone involved in a project like this needs to be understanding that autism is only a disability in the context of the stressors that it creates. If the stressors are reduced or eliminated so is the disability to a great extent. What the disability becomes, it becomes a trait, a neurodivergence only without an overt tone of being a negative thing. It's not a negative thing in this context. It's a personality trait more than anything else. 

I have long thought of high functioning autism as again personality types like I feel that ADHD also meets this definition. These are akin to being shy or outgoing or any personality type a person has and can be described as a commonality. 

Once these students get out of a traditional school program they will gravitate to activities and careers that meet their learning preferences and their personal preferences. 

In addition the students we're talking about often are the most or among the brightest that we have and to waste that potential by not supporting it becomes a personal tragedy and a societal loss at the same time. 

But when many people who are autistic get out of the system they could do extremely well, and they often do because many times they are so bright, and they have some sort of super strength. 

What we should be trying to do in education is to soften I guess the blow of the trauma that they experience of being in this sort of a foreign environment and lastly our schools need to pay attention. The old paradigm of how to work with these students is not working and it won't in the future. We need to look at ideas like this. We need to start thinking outside of the box.