High School and Students with High Functioning Autism: Obstacles and Optimism

This episode looks at the current state of education for high school students with high functioning autism.  It is not good.  It is not good, but there is hope.

The students we are discussing experience exceptionally high rates of intense anxiety in school settings.  A combination of factors including the sensory overload, behavior issues due to social skills deficits, academic struggles because of organization and focus problems are among the most common ones leading to school failure.

We’ll look at factors that lead to the sometimes-debilitating mental health challenges many of these young people suffer from.  Who are they and why does the system fail them so completely?

We’ll also look at a study that was conducted in the UK that describes a school for the youth we are discussing and why it has changed the lives of many of its students for the better.  What it takes to create a successful program is quite simple and involves providing the support these kids need in a safe, nurturing environment.

And we’ll discuss what the school does to prepare students for adult life, and the limitations it faces.

And last, what would a program look like that would provide both an education and the life skills needed to transition to a successful adult life?  

Link to article used in this program:

https://pmc.ncbi.nlm.nih.gov/articles/PMC10583514/

Thanks to soundimage.org for the free access to the AI generated music used in this podcast (https://soundimage.org/) 

Transcript

Today I'd like to talk about teens with high functioning autism and how they are faring in the educational system, and to report on hopeful developments in the 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 of these kids is a relatively accurate description of what many of these teens’ face.

Who, specifically, are we talking about? These are teens and young adults that are 14 to 20, average to very high cognition, very high IQs are not unusual. 

They're generally visual spatial learners.  Dr. Temple-Grandin who is autistic, describes her interactions with the world as "seeing in pictures", which is also a  book 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 related to the processing issues. These are kids who rarely had friends come over when they were young and they generally 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 higher than baseline data for sexual identity issues 

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 issue because these kids are so articulate and knowledgeable (about their favorite topic only). 

They may or may not be dyslexic, between 20-40% are.  They may also have ADHD (again a significant proportion do).

Educationally, the problems often start 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 trained how to work with these kids.

In elementary school, these students are often at or above grade level in 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, social anxiety and peer issues around bullying, sometimes school refusal, academic difficulties and organizational issues start to become more apparent. Many cases recently that I've seen have these similar symptoms; depression and  isolation - verging on agoraphobia and the underlying severe anxiety in any school setting. 

There are a lot of school avoidance for somatic symptoms. 

There is often a rejection of any structure-based PBS positive behavior support or applied behavior analysis program. This is a really interesting one because behaviors are such a consistent feature of these kids experiences in school, and I'm interested in the fact that ABA has this effect. 

This is anecdotal on my part, but parents tell me there is a certain point where their student looks at these programs that are highly structured and says "No, that's not who I am. This is damaging me".   The anecdotal part is becoming more difficult to isolate to my experience; these issues seem to be 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 in 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 self-injury for people who used to head bang, for instance, before the ABA became a wide-spread practice. 

However, there seems to be a point where the person realizes that 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 the language processing issues that are present, there's difficulty expressing this discomfort. 

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

Now let's look at the effects on these teen’s 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, a 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 sites 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 the children, but the efficacy of the behavior interventions based on this structured model becomes less effective over time, as I mentioned. It's kind of like they 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 just not gotten this. Educators insist on the model for younger children and apply it to teens, and it's often with disastrous results. 

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.  

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 for middle and high schoolers that was based on that idea of having a place to go on campus, a sanctuary, a place where they could be comfortable. 

The study is called "He's Shouting So Loud, But Nobody's Hearing Him," about autistic pupils' experiences of school nonattendance and exclusion. 

The article researchers report, "Parents and teachers often describe their autistic children and students as academic, very bright, phenomenally intelligent, and very articulate, but nevertheless felt that they were just too overloaded in mainstream im 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, one said, “so I basically just mentally logged out”. 

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

The students’ social struggles were exacerbated by the desire to fit in, to be just like them. They also felt overloaded academically, especially with homework, which one described as, “extremely stressful and often led to a lot of sanctions, leading to lots of distress”. Many young people attributed their hate for homework to a straight separation between school and home.  “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 a general feeling that school staff didn't understand what to do with the students. Young people described how they would have, “benefited from more support and help a bit more one-to-one.. 

One teacher portrayed his students' anxiety as very tangible, saying, “it’s almost like you could reach out and touch it.”

Interviewees described 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 saying, “it's not necessarily that they can help it. It's that their anxiety is getting in the way.” 

Parents agreed. “If this anxiety is 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, quote, decided to leave.”

The distress of being excluded extended to families. A parent reported, “It has been really, really difficult for us as a family.” 

Parents reported having to give up work because it was impossible for me to maintain a job and how the exclusion process had negative effects on their own mental and physical health. a parent shared, “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 trying 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 was because alternative options were very few and far between.  

Professionals agreed with their sentiments while they felt their role about working with the family and empowering the families and being proactive rather than reactive. “In reality, they 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 professionals concerned about not being able to intervene earlier before it reaches a crisis point, they were adamant that there was no capacity to be more supportive. 

Now, let's talk about the kind of school that was created for these students and what the results were. 

Following are the experiences of these students in an alternative setting, and what that setting emphasizes, which is empathy, kindness, and most of all, flexibility. It’s important to note there is one-to-one support for all students 

Here the article describes 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. 

‘It's relaxed but structured. The smaller 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 staff are friendly. Parents agreed that their children's new placements were more flexible. 

‘They don't mind too much of 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 is also the way in which staff tailor child's and their children's learning to suit his particular abilities. 

‘They still follow the curriculum but do it in a way that engages the child rather than this is 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 teachers 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 will 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 always feel 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”.  

From the parent's perspective, they describe how their autistic children are quite alert of how people perceive them. 

‘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 environments. 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 he can develop a relationship with and who understands him and his needs. 

Teachers describe having a really strong relationship with parents who they contact on a weekly basis, preferably by telephone. 

‘The idea 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 it.  

One thing I will say that's an aside, 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 of 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 positive than negatives. 

One parent summed it up,  ‘as astounding, really. He has a future now, whereas before there was no future for him. 

But this is from the teacher's perspective. They understood why parents want them to stay as long as possible, even when it's not necessarily in the best interest of the kid. They discussed their many attempts to start the transition as early as possible so that we're not completely cutting the apron strings. 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've 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 they have, the chances of a successful transition are certainly much greater.

With the idea of transition in mind, what might a good program look like where you are?  A program that provides the emotional support, academic success AND a way for students to progress from it to independent adult life.

The following concept is mine, and while there is research to support the ideas, it’s mainly based on what parents have shared with me about their children’s needs.

It 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 then 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 was there one to one 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 the accompanying social and emotional needs and be committed to the job with the knowledge needed to provide empathy and understanding. 

Teachers and students agree on what type of learning style the student has.  Instruction is based on that style.

For example, as most of these students are visual-spatial learners, and if a particular student is interested in becoming an electrician, a significant amount of the core curriculum can be taught using hands on and relevant lessons.  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 talent’s, 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 should have regular outings into the community to assist in re-integration work. 

The way I think of this is that there are 18- to 22-year-old programs for students who don't graduate from high school with a diploma, these are students who usually have more interfering disabilities. 

The purpose of the 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, and have a bank account. 

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 need a reintegration into society.  They need to learn or re-learn how to navigate the world.

They would be in the community doing 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. 

And above all, I think everyone involved in a project like these needs to  understanding that autism is sometimes a situation-based disability in the context of the stressors that the situation creates. 

If the stressors are reduced or eliminated, the effects of disability are decreased. What the disability can become, is a trait, a neurodivergence, a difficulty to be managed.

In closing, The students we're talking about are often 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.  The failure to adapt schools to these students leads directly to the low employment rates and accompanying depression and anxiety among too large a number of this population.