An Autistic Philosophy of Education

So….. I still haven’t found enough time to finish my first new blog post, as I have been tasked with report writing at my job. I didn’t even make the deadline I imposed on myself for this blog. I swear I’m working on stuff. So instead I’m posting yet another paper that I wrote for grad school. This is an excerpt from a longer paper that I wrote on best practices for teachers and I had to explain where I was coming from with my suggestions so I’m posting that. I figured that this would be good to post because it touches on things that I plan to address in the blog, such as new approaches to mental health, Floortime approaches for autistic students, and others. The previous paper I posted was from when I first started grad school and you could say that this is the culmination of everything I’ve learned and will take away from the program.

Check back in two Mondays from now for a new post!

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I have formulated the basis of my educational philosophy while working at The Rebecca School, which is a school that is devoted to the needs of autistic children who experience sensory issues and neurological difficulties to the degree that granting them access to the Common Core curriculum is a difficult, if not impossible, task; the school is known for working with the most challenging population of students in New York City. The modus operandi of the school is that the relationship between the student and the teacher is paramount and everything else follows. This kind of approach, referred to as Floortime at the school, has its home in the theories of Russian psychologist Lev Vygotsky, whose posthumously published quote forms the basis of my educational philosophy:

Every function in the child’s cultural development appears twice: first, on the social level, and later, on the individual level; first, between people (interpsychological) and then inside the child (intrapsychological). This applies equally to voluntary attention, to logical memory, and to the formation of concepts. All the higher functions originate as actual relationships between individuals.” (Vygotsky 1978)

In other words, children learn by example. Children’s behaviors and mental patterns are the product of those of their parents, teachers, caregivers, peers, and other folks with whom children spend significant amounts of time. Although this idea originated in research conducted in the 1920s and 1930s by Vygotsky, a slew of contemporary studies conducted by modern Vygotskyists have explored these theories and have found truth to them (Ahmadi Safa & Rozati 2017; da Cunha Júnior 2017; Brolles et al. 2017; Guseva & Solomonvich 2017). The implication of this research is that a good teacher not only understands the science behind good instruction (has a good grasp on the latest research in education, psychology, and other related disciplines, is able to develop successful lesson plans, etc.) but also understands how to teach students prosocial behavior through action. Since my personal discovery of the Floortime framework and Vygotsky’s theories, my sense of what was possible in the development of all people, regardless of developmental challenges, had greatly expanded.

My interest in education represents the intersection between my interests in psychology and in social justice. I am a believer in understanding the science of human nature – psychology – as a means to attain human liberation and education represents a chance to implement these core values on a communal level. As far as the study of psychology is concerned, I am ideologically aligned with the recently published Power Threat Meaning Framework, a 400-page scholarly article written by the clinical psychology division of the British Psychological Society, proposes a new framework which aims to understand psychological processes as chiefly reflective of an agent’s environment, especially power imbalances. The contention of this work is that power imbalances in our personal lives and society on the whole contribute to what we consider symptoms of mental illnesses and psychiatric disabilities that are common in the classroom. Symptoms associated with mild mental health issues such as avoidance, emotional regression, and concentration problems, and even symptoms associated with more serious psychiatric problems such as hallucinations, self-injury, and ritualistic behavior, could be indicative of experiences with power imbalances that the patient finds threatening to his or her own well-being (Johnstone, L. & Boyle, M. 2018). These power imbalances could be the result of abusive relationships with caregivers or generational trauma passed down from parents, which, themselves, could also be rooted in systemic violences such as racism, sexism, ableism, elitism, and homophobia among others (Johnstone, L. & Boyle, M. 2018).

Essential to the positive development of the student, regardless of degree of needs, is the development of agency and a resulting sense or self – the feeling that the things that one does have an impact on their surroundings and the world around them. Psychologist Karl Groos, in his book The Play of Man, calls this the ‘joy of being a cause,’ in which children derive pleasure from being able to manipulate the world in some way (Groos 1901). In order to properly engage with the world, the child needs to have a sense that what they do has a tangible impact on their environment and the people around them. Otherwise, why would they bother doing anything at all? A baby cries when it is hungry in hopes of communicating to its caregiver that it wants food; when the caregiver does not give food, the baby either cries more intensely or will eventually withdraw, reducing the baby’s sense of agency and sense of self as they get older when left unchecked (Greenspan S. & Shanker S. 2004). Students with behavioral issues may have not had that sense of agency established when they were younger and act out in an attempt to exert agency over their own lives and their surroundings when they may otherwise feel that they have none.

This development of personal agency is a driving force of critical pedagogy as described by Paulo Freire. In his approach to education, the teacher and the student are ‘comrades’ in learning experiences; the teacher acts as a guide in a student’s learning experiences rather than simply depositing knowledge into a student’s mind, which represents a more traditional approach to education, one that is increasingly criticized for being outdated and inappropriate for a majority of students. Freire advocated the development of not only a child’s agency but also a political consciousness. Developing a moral compass and a critical lens with which to view the world early on equips students the tools they need to transform the world they live in so that it is better for themselves, their peers, and future generations.

I find that considering students as the totality of the experiences provided by their environments can be extremely helpful when thinking about their motives and designing interventions for them. The Floortime model – as well as related models and theories – and the Power Threat Meaning framework provide excellent and non-oppressive theoretical tools for working with students while the ideas of Paulo Freire set a standard for educators to work toward. Education, as well as the decision to pursue it professionally, is a political act; whatever tactics we take now as educators will have an impact on the world in 15 to 20 years, as we will witness through how the children in our classrooms behave as adults. We are at a political tipping point in the United States and the rest of the world, where growing income inequality and climate change have become too dangerous to ignore. There are examples of children standing up to injustice in the Parkland shooting survivors and the Juliana v. US case. It is my goal to educate a generation of students that are equipped to tackle these problems.

References

Ahmadi Safa, M., & Rozati, F. (2017). The impact of scaffolding and nonscaffolding strategies on the EFL learners’ listening comprehension development. Journal Of Educational Research, 110(5), 447-456. doi:10.1080/00220671.2015.1118004

Brolles, L., Derivois, D., Joseph, N. E., Karray, A., Guillier Pasut, N., Cénat, J. M., & Chouvier, B. (2017). Art workshop with Haitian street children in a post- earthquake context: Resilience, relationship and socialisation. International Journal Of Art Therapy: Inscape, 22(1), 2-7. doi:10.1080/17454832.2016.1245768

da Cunha Júnior, F. R. (2017). Monitoring activities: a possibility for classroom development. Educacao E Pesquisa, 43(3), 681-693. doi:10.1590/S1517- 9702201707154754

Groos, Karl. The Play of Man, translated by Elizabeth L. Baldwin. New York: Appleton (1901).

Guseva, L. l., & Solomonovich, M. (2017). Implementing the Zone of Proximal Development: From the Pedagogical Experiment to the Developmental Education System of Leonid Zankov. International Electronic Journal Of Elementary Education, 9(4), 775-785.

Johnstone, L. & Boyle, M. with Cromby, J., Dillon, J., Harper, D., Kinderman, P., Longden, E., Pilgrim, D. & Read, J. (2018). The Power Threat Meaning Framework: Towards the identification of patterns in emotional distress, unusual experiences and troubled or troubling behaviour, as an alternative to functional psychiatric diagnosis. Leicester: British Psychological Society.

 

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Neurodiversity: An Alternative Approach to Education

PRE-SCRIPT/CONTEXT: As some of you may already know, I’ve made the decision to blog again, now that graduate school is no longer taking up my writing time. I’m having a wee bit of trouble getting back into the blogging rhythm and I did mention in my previous post that I may post stuff that I wrote for school as I get crackin’ on new material, which will be more substantial by nature.

This is a paper I wrote for my philosophy of education class and the purpose of the paper was to pick a school of thought in education that we talked about and defend it. Instead, I made up my own because none of them completely satisfied me. I combined the liberal-progressive model of John Dewey – letting students explore their interests – and the critical pedagogy of Paulo Freire – developing political consciousness and critical thinking skills – and added the ol’ autistic sensibility to it. Enjoy!

Introduction

My main focuses as a future special educator are disability and neurodiversity, particularly autism, and I would like to use my interest in the prospect of educating an autistic population to outline the best educational philosophy for them. Everything discussed in this paper will mainly be informed by my professional experience working as a mentor for autistic adults, my personal experience as an autistic adult who grew up receiving special education services, and independent research that I have done on the topic prior to this class. One of the goals that I hope to accomplish as an educator is to create a school that addresses the unique needs of the autistic population and the challenges they face. The philosophy outlined here – which will involve the empowerment philosophy and teacher-student partnership outlined in critical pedagogy and the freedom to interact with peers and explore one’s own interests found in the liberal-progressive model – will be the philosophy of this school. I will refer to this hybrid educational philosophy as the neurodiverse approach to education. This style of instruction, influenced by the idea of neurodiversity, is needed because no other educational philosophy effectively addresses the needs of this particular population. I am appalled that no such approach has been discussed yet. It accurately reflects the diversity of the human race in terms of not just gender identities and ethnicities but also brain wirings, it directly addresses the oppression that these students face, it stimulates learning by fostering and catering to the widest range of interests possible, and, by mandate of IDEA, it focuses on creating the “least restrictive environment” for all students.

Before I proceed, I should attend to the valid question of why I am specifically addressing the issues faced by the autistic population in this essay as opposed to any other group or the general student population. In order to create an educational system that works, you need to take into consideration its sheer diversity of the autistic population, let alone all neurotypical and other kinds of neurodivergent students (neurodivergent is to neurotypical as queer is to straight). In order for an educational method to work for such students, you will need an approach that is maximally flexible, empowering, universal, and conducive to the development of individual skill and talent. The case is the same for a neurotypical student body; they would benefit from this approach as well and could even address students who are undiagnosed but still need specialized instruction. As a result, much of the approach that I outline here could easily be used to educate students of other populations and would work especially well in inclusion settings. As inclusion becomes the norm in schools, an approach to education that addresses neurodiversity will be very much needed. Special educators will find the neurodiverse approach especially useful for their students, whether they teach inclusive classes or special education classes. I will now give a (very) brief explanation of autism, its history, and why an entirely new approach to education for this population is necessary.

The Place of the Mentally Ill in America

The history of mental health and disability in the United States is dark. It is full of unsanitary institutions, unsolicited torture, and false cures, with the people usually being condemned from the moment they are diagnosed (Whitaker 2002). Meanwhile, autism itself has been around for all of human history, with famous historical figures such as Isaac Newton and Adam Smith thought to have autistic traits, but has never been recognized as a unique state of mind. The people who we would say have Asperger’s today were simply considered eccentric and the more serious cases of what was not yet known as autism were given other diagnoses and subject to the highly inhumane treatment of mental health professionals. Autism has not been conceived as a tangible concept until 1943, when psychiatrist Leo Kanner first described autism in the form of ‘early infantile autism.’ From there, it was lumped in with other mental illnesses and was thought to be the childhood version of schizophrenia, mainly as a result of the narrowness of the definition put forth by Kanner that only included the autistic people to which we refer today as ‘low-functioning’ (Silberman 2015). This was because Kanner was working with patients that were already considered to be in need of psychiatric help so it should be no wonder that the first people to receive the label were already considered to be in need of psychiatric help, which started the reputation of autism as a bleak mental illness.

The definition has expanded since then to include ‘high-functioning’ autistic people and other people who have autistic traits but don’t need the kind of support that those who are autistic in the traditional sense need. The expansion of the definition of autism is a controversial topic and easily the subject of another essay. For the purposes of this particular essay, it is important to know that autistic communities (which include autistic people and their advocates and are ‘communities’ in the plural due to the diversity of these experiences) have lived in obscurity throughout most of human history and now that these voices are out in the open and can communicate through the Internet, there are a lot of conversations to be had, including heated debates about what autism is and whether or not this expansion of the definition is fair. As an oppressed group that has lived in silence and has been, and still is, at the mercy of psychiatrists and psychologists, the autistic population is in dire need of an education that addresses this history.

This dark history, while it is slowly coming to an end, has resulted in a fear of the world in its victims that translates into a lack of motivation to engage with it fully and, by extension, flourish. Yet autism researchers and laymen alike routinely place the blame for lack of success on something supposedly intrinsic to autism, which the population proceeds to internalize. This is a phenomenon that I have seen when I have worked as a mentor for the adults of this population, having to be their advocate, and have also personally experienced. When you feel like you are living in a world that has nothing to offer you and is actively shunning you with an onslaught of double standards, damaging myths, and bullies, you feel less motivated to participate in it.

An example of a double standard with which autistic people often contend has to do with communication. If you are autistic and you do not understand someone, you are blamed for being incapable of understanding others. If you are autistic and someone does not understand you, you are blamed for being unable to communicate. Either way, an instance of failed communication is understood to be the fault of the autistic person, regardless of who misunderstood whom. Why bother trying to communicate with others when it is said that your communication fails on both sides? The student in this model is therefore oppressed by virtue of the double standards and unwarranted blame, among other factors, and this oppression shows itself in their lack of engagement with the world.

The Role of Neurodiversity in the Classroom

The hallmark of the neurodiverse approach that I am proposing is the personal relationships that the students will develop with their teacher and their peers. The benefits of forming relationships with other people for the autistic population cannot be understated. Because of the complications that arise from their sensory issues and the reality of marginalization, their experience of the world can be extreme and even scary. As a result, they feel less inclined to make friends and end up withdrawn. Feeling a sense of belonging and comfort in the student’s own body and surroundings will help him or her open up.

The challenge in developing an approach for the autistic population is that one approach that works for one student may not work for another, especially considering that autism is often comorbid with other conditions such as ADHD or generalized anxiety, which further complicates their needs. While diversity is a fact of the neurotypical population as well, the differences are far more pronounced among autistics and it is especially important to remember not to make sweeping generalizations about the population, despite the common label. Dr. Stephen Shore summed it up well: “If you have met one person with autism, you have met one person with autism.” It is foolish to make generalizations about the way the entire population thinks based on the DSM. Because of the nature of teaching neurodivergent students needs to be open-ended, the job of the neurodiverse teacher is, like the Freirean teacher, to develop a trusting relationship with each of his or her students, to empower his or her students while acting as their advocate when needed, and to use his or her best judgment in deciding how to instruct a particular student by accommodating for any special learning needs.

It is also the neurodiverse teacher’s job to create an environment that is maximally comfortable. One way of doing this, in addition to having a good relationship with the teacher, is to create companionship among the students and to have them routinely interact with each other. This will build the autistic student’s social skills. It is also necessary to create an environment that is quiet and free of extraneous sensory stimuli, which can be very disruptive for the student.

Building a sense of community in the classroom and making sure the student’s needs are met will open up the student, who will, in turn, cast off his or her fear of the world and become more open to what it has to offer. Only then could learning take place. I have seen autistic adults consistently held back by fear of judgment, which affects their learning and willingness to try new things, whereas the ones who are the least fearful of judgment interact with the world more freely and thrive. As one could imagine, a small classroom with no more than twelve students is the best environment in which to carry out this style of teaching. It is recommended that the class be neurodiverse as well, having both neurotypical and many kinds of neurodivergent minds in the classroom, including autistic, although this approach could also work with any mixture of minds. This approach will be even more effective if the teacher is a good advocate for the students; it will give them the sense that their existence matters.

So far, I have outlined a few components of the philosophy: the student as a gifted but oppressed member of society, the teacher as a guide, instrument of empowerment, and advocate, and the learning environment as a sanctuary and second home. With these elements in place, the student is ready to grow. How do they grow? What do the curriculum and the methodology look like?

From here, it is a matter of letting the students explore their interests. Like in the liberal-progressive model of education, the best way to teach something is to find a way to make it meaningful to the student. Because autistic people also have unbridled mental energy that they can effortlessly apply to their interests, they need the freedom to explore their interests in whatever capacity the teacher can provide. Since the autistic person is a curious spirit, there is a very good chance that they come in the classroom with their own interests. In addition to having the freedom to explore their interests, the teacher, following the critical model of education, needs to work to undo the years of oppression done on the population to the best of his or her ability. The teacher can do this by fostering a sense of justice early on, by giving them a voice and a sense that their opinion matters, and by understanding how oppression towards them (ableism) affects them and how they can overcome it.

Conclusion

As outlined, the goals of the neurodiverse model of education include empowerment to become self-advocates, individual growth and development of personal vision, and the development of social skills that neurodivergent students have trouble developing on their own. Bringing together the social justice drive of critical pedagogy and the pragmatic components of progressive education, neurodiverse education is effective because it addresses issues in education that are becoming more relevant that other models do not consider, specifically the education of students with special needs. Neurodiverse education draws attention to a dimension of diversity that concerns the way individuals think, it addresses the oppression that students face, it follows the mandates of IDEA that make it a law that students with disabilities can access and participate in the classroom, and it liberates the student by allowing for maximum expression of the student’s self by encouraging them to explore their interests. This approach to education is necessary in order to reflect the growing needs of the special education population. I find it surprising that nothing like this approach exists in the mainstream yet but to be fair, we are currently at a point in human history when autism is starting to become recognized as its own legitimate mental state, rather than as a mental illness. Our society would benefit from the unique perspectives of this population and now is the time to start.

References

Silberman, Steve (2015). Neurotribes: The Legacy of Autism and the Future of Neurodiversity. New York, NY: Avery.

Whitaker, Robert (2002). Mad in America. Cambridge, MA: Persus Publishing.

I’m Baaack! (Again)

For the 3rd or 4th time, I’m starting this blog up again. For the entire time from my last blog post until now, I’ve been enrolled in a graduate-level teacher training program at Hunter College to become a certified special education teacher for elementary school students. So I’ve been busy writing papers and immersing myself in the world of special education.

I learned a lot of cool stuff along the way. For example, I worked for one year at a special education school, the Rebecca School, that is known for its innovative approach to working with autistic children called Floortime. I’ve immersed myself in the theory of Floortime and what makes it tick – I even wrote my master’s thesis on it – and will probably write about it at some point here (spoiler alert: it works AND is non-oppressive). I’ve also had a year-long stint with socialist politics and activism, having been involved in a socialist organization in addition to work and school. That experience has helped me integrate the injustices that I have seen and experienced on a personal level into the bigger picture.

All the while, I’ve received pressure to continue with this blog from some people. I’m bringing the blog back and will try to write one quality post once every two weeks, possibly on Mondays. Check back in two weeks!

I may simply publish some papers I wrote in school as I write up some new material in order to get myself back in the blogging rhythm.

Where The F*ck Are The Birds And The Bees?: The Reality of Sex and Sexuality for the Disabled

So here’s something that I promised to post two weeks ago. I went on vacation and thought I’d have time to write this. I didn’t. So here it is now. Sorry about that. Also, I’m gonna be talking about sex, something I almost never do. I’ve never had a proper sex ed class and everything I’ll talk about comes from personal experience and research so you may notice some of my own personal hang-ups about it. There’s nothing I can do about that. Sex is highly personal. Everyone knows that. Except for douche bags who feel like they have something to prove.

The intersection between disability and sexuality can be a touchy subject. Because of the long history of segregation, mistreatment, sterilization, and infantilization of disabled people, they have emerged from that history desexualized. The stigma surrounding their sex lives is pervasive. They’re assumed to have either no sex life or a deviant or unhealthy one (eg. not having ‘real sex,’ being ‘oversexed,’ being too spontaneous, too rigid, too freaky, too vanilla, etc), although the lack of sex life is the more common assumption. Either way, a healthy, satisfying sex life is out of the question and the underlying assumption in nearly all cases is that they should be denied sex.

Because of this, disabled people are marginalized in the world of sex. The intellectually and developmentally disabled are thought of as perpetual children who want to remain virgins and the physically disabled are supposedly unable to have sex. Unfortunately, these views make things worse. Not only does denying their sexuality run the risk of repressing their desires and give them no outlet for expression, thus stunting their development, but also it makes them vulnerable to sexual abuse; they won’t know how to navigate (potentially) sexual encounters because no one thought to tell them how.

Consent vs. Sexual Abuse

We take it for granted that sexual abuse is a real issue and I won’t harp on it here. The numbers for the intellectually and developmentally disabled are staggering at 30% for men and 80% for women because they could be easily taken advantage of. They are the most sexually vulnerable group of people.

However, our feelings about disability and sex together are so conflicted and out of whack that even consensual sex is sometimes thought of as rape or abuse if it involves a disabled person. I’m not denying the reality of sexual abuse towards the disabled but because we assume that they aren’t sexual, we blur the line between consent and abuse. We don’t know if they consented because we never ask them and we never ask because we assume a lack of sexuality from the start.

I’m going to use the Anna Stubblefield case to make my point. To make a long story short, Stubblefield, 45, a philosophy professor specializing in ethics and social justice at Rutgers, is facing a potential 40-year sentence for two counts of (alleged) aggravated sexual assault towards DJ, 35, a black man with cerebral palsy who uses a wheelchair and is unable to speak. Stubblefield took him on as a student in 2009 and helped him learn to communicate using facilitated communication (a controversial method but that’s a different story altogether). According to Stubblefield, the two started developing romantic feelings for each other and had consensual sex twice (hence, the two counts) in 2011. The court found Stubblefield guilty on the grounds that DJ supposedly had the mental capacity of a toddler and was therefore unable to consent to sex.

It’s important to note that DJ was not allowed to testify – his only method of communication was considered unreliable in the court – and he was only used as evidence by his mother, who got the case started because she assumed that her son couldn’t have consented to sex due to his cognitive impairments. Since DJ was never given the chance to tell his side of the story, I can only conclude that we don’t know for sure if this is a case of sexual abuse or a real encounter to which DJ consented.

Again, I’m not denying the numbers – sexual abuse is a serious matter that shouldn’t be treated lightly – but after hearing and thinking about the Stubblefield case, I’m starting to wonder how many other cases were there where a court case is built on ableist assumptions and delivers a verdict in which disabled people are not treated like autonomous beings.

Sexuality As A Key To Good Development

I’m not just talking about the right to have sex without people thinking you have no say in it or thinking that you should be ashamed. According to Leslie Walker-Hirsh, an expert on the intersection of disability and sexuality, “sexuality is a huge part of a person’s development. It impacts how you perceive the world and how you interact within it.” So what happens when an individual or a society attempts to repress that side of themselves? Your personal development becomes stunted and you won’t know how to express yourself sexually when the time comes. It’s no coincidence that the more sexually open (NOT promiscuous) nations of the world tend to be happier and have lower rates of sexual abuse, teen pregnancy, and mistreatment of women. Obviously, the picture is more nuanced than that but that’s the general pattern and the same principle applies here.

Let’s face it. Everyone thinks about sex, disabled or not. Some think about it more than others but we think about it. It’s our way of producing children and keeping humankind alive so it makes sense from an evolutionary perspective to have sexual urges. We develop curiosity about sex early, which can be seen in children playing with their own genitals (not necessarily masturbating). If the myth that disabled people are non-sexual persists and if we don’t give them the room they need to explore their sexuality, it could negatively affect their social development, they will continue wondering what sex is all about, even if they don’t explicitly show interest, and it may show in unhealthy ways, which may lead to the stereotype of being sexually deviant.

Sexuality is not about being ‘hot’ or having lots of sex – assuming that simply being promiscuous makes one sexually mature is like assuming that eating a lot gives one’s body proper nutrition. It’s about taking full ownership of who you are as a person and how you handle your relationships with other people. It’s about knowing the meaning of consent, understanding the concept of personal boundaries, knowing what gets you off, taking control of your body, and not simply giving it to someone just because they ask for it. One should be encouraged to have sex and make mistakes along the way because this is the only way one can learn about and uncover their sexuality. It’s important to note that a well-developed sexuality and sexual identity can mean the difference between a boy/girl and a man/woman.

What This Means For Autistic People

If one’s sexual development is stunted or discouraged, one’s social development may be stunted too, which makes it a double whammy for autistic people who have enough trouble navigating social norms as it is. Sex is a whole other bag of mice. It can be hard enough to navigate regular social encounters but when it comes to navigating sexual encounters – with poorly tailored sex ed under our belts, if any – it’s nearly impossible. We’re left on our own and it can be terrifying enough to scare us away from sex altogether.

During the one time I had a one-night stand when I actually started exploring my sexuality, I had no idea what to do and it ended up being quite literally a fucking disaster. When you receive the message that autistic people shouldn’t have sex, you feel a sense of shame for having sex at all so I never talked about this encounter with anyone. This conflicted with the thought that I was 19½ years old, still a virgin, and needed to lose my virginity already. Now that I’m more sexually confident and have started coming to terms with the true nature of my sexuality, I sometimes wonder if I’m the kind of person who would actually enjoy one-night stands but I’ll never know for sure. I don’t know if it’s something I’ve repressed or if I’m just not that kind of guy but it’s something I’ll just have to deal with not knowing. I occasionally wonder how my sexuality would have blossomed if I felt freer to explore it without the shame or stigma that came with being autistic.

On top of being very socially awkward and poorly educated on sexual matters while still wanting it is the message that we should not be having it in the first place. There are parents like DJ’s mother who think of their disabled sons and daughters as too innocent and childish to have sexual thoughts, let alone be sexually active. Why? Because of the way they look and move?

To most of us, sexual frustration is a normal part of life. Not because we want it too much but because we are curious and yet are denied sexuality.

So What Now?

The first place to start is to assume that we are sexual beings as much as yourself. There’s no reason to assume we aren’t. Even if we don’t communicate interest in sex, we are interested in sex. We won’t tell you we are because we’re afraid of the judgment. Believe me, it’s there. We are not children.

Do not assume that we are all straight. There’s no ‘autistic sexuality’ any more than there is a ‘neurotypical sexuality.’ From asexual to polysexual, from straight to gay, from cisgender to transgender, our sexualities lie on a spectrum like everyone else.

We need sex ed classes specifically tailored for us. Create sex ed classes that address real issues that we may face, such as sexual abuse, how to navigate sexual encounters more gracefully, how to respect people’s boundaries, and…how to deal with sensory overload during intercourse.

It’s important to note that disabled people are not the only ones who suffer from a repressed sexuality. We cannot move forward in this until Americans stop being so prudish about sex in general. The attitude Americans have toward sex is damaging not only toward disabled people but also toward anyone sexual (meaning everyone). Our inability to talk about sex maturely is the root of all kinds of sex-related problems in America such as rape, teen pregnancy, spread of STDs, etc. Nations that are sexually open such as the Netherlands are not plagued by problems like this (I should also mention that the Dutch government subsidizes sex for the disabled, mainly for therapeutic purposes).

So…don’t be so damn weird about sex and stop taking it so seriously.

Love in Chains: The Myths Surrounding Autism and Romance

This is a two-part series that addresses the topics of love and sex in relation to autism. I was originally going to make this one post but the intersection of sexuality and disability is wildly interesting and deserves its own post. I will post about next Friday.

My girlfriend is neurotypical. She’s not a saint but she’s my saint.

I would say that for people in our mid twenties, our relationship is beautiful and healthy. We love each other a lot. We build each other up, can talk on the phone for hours, and poke fun regularly without a hint of malice. We’ve reached a level of comfort that involves farting in front of each other and we’re not afraid to call each other out on our bullshit when necessary. She has been accommodating of my ways and has been explicit with me from day one. Not only are our thoughts and feelings constantly on the table but also we analyze them and use what we learn to make our relationship better. I managed to beat the stereotype of not finding love and found something extraordinary. She’s not just a girlfriend to me; she’s my partner. I could easily go on and on about her but for your sake, I won’t.

I’m not unique. Lots of other people on the spectrum have found true love. Unfortunately there are too many pervasive clichés surrounding the idea that the autistic are incapable of love or that they do it wrong, some of them affecting us deeply enough so that they become self-fulfilling prophesies. I want to address some of them.

We’re too preoccupied with our own interests to engage with another human being.

People who talk about autism seem to speak of autistic ‘obsessions’ as if they cannot be a catalyst to bonding with other people. My girlfriend and I happen to share a lot of nerdy interests and we frequently bond over them, whether it’s psychology or a mutual favorite TV show. If you are autistic and very interested in something, chances are there’s someone else who’s as interested as you are.

We have a narrow conception of love as a state of constant euphoria and are thus incapable of deep, long-lasting love.

Same for teenagers. Same for overly frequent watchers of romantic comedies. Same for anyone emotionally immature, really. The barrier to deeper love isn’t disability but a lack of maturity and/or self-knowledge, something that everyone should be responsible for cultivating. It’s the reason the majority of single people are single, not just autistic people, so pretending that this is a uniquely autistic problem is actively harmful to everyone, autistic or not.

The question to ask isn’t ‘does his autism prevent him from experiencing true love?’ but rather ‘is this person emotionally mature enough to love and be loved on a deep level?’

We lack empathy, which is a very important component of a loving relationship.

What looks like ‘lacking empathy’ can actually be a defense mechanism against the extreme amount of sensory input that we regularly face. I hear very different accounts of how our minds work from other autistic people but to use myself as an example, I take in a lot of sensory information at once but I process it one piece at a time. When I was growing up, I didn’t know how to filter this information but this is a process that neurotypical people take for granted.

If anything, because of the fact that we take in so much information, we are actually so empathetic that it can be crippling. If my girlfriend is in a vaguely bad mood, my mood becomes much worse than hers. If she’s in a really bad mood, then I could regress emotionally and risk making a complete fool of myself (this is my version of a meltdown). On the flip side, if she’s happy, I become ecstatic.

We are incapable of expressing love.

This one depends on who you ask.

Like any great couple, my girlfriend and I do occasionally fight. One day, she complained that I don’t say ‘I love you’ as often as she does and I was genuinely confused. I’m absolutely sure that I love her and showed her so several times. Why was she not acknowledging it? This genuinely made me question my capacity for love, although having been bombarded with the idea that autistic people are doomed to a life of loneliness due to their supposed inability to connect, I’ve questioned it for a long time.

It turns out that like neurotypical people, the autistic can have their own ways of expressing love. It turned out that I have different ‘love languages’ then she does. These love languages are broken down into five areas: giving gifts, quality time, acts of service, words of affirmation, and physical touch. She says ‘I love you’ frequently. I cook for her. She occasionally buys small gifts for me. I help edit her papers for her classes. She gives me surprise hugs. I give her a shoulder to cry on when she needs it. Et cetera. Our expressions of love are varied enough to keep our relationship interesting and deep.

We don’t want or enjoy sex.

Yes we do. Just ask my girlfriend. We all have different levels of sexual energy and to assume we are all asexual is misleading

And, for some reason, the flipside: we want sex too much.

It’s not called ‘being autistic.’ It’s called ‘having a high sex drive.’ Again, sex drives vary among us. We are not exempt from the diversity of the human experience.

Tune in next week for more about disability and sexuality!

A WORD FROM MY SPONSOR: Having an autistic partner or being autistic and in a relationship can be hard. I would know. If you are having trouble with your partner/boyfriend/whatever and want to make it work, whether you’re autistic or not, consider couples therapy. Check out this resource from BetterHelp to get started. Heck, your partner doesn’t even need to be autistic in order for it to work.

Portrait of an Autist as a Young Man

As I start blogging again, I’m trying to get my head back into writing mode. It’s a struggle but I’m getting some ideas. In the meantime, I thought I’d satiate you by posting something I wrote in the past that’s related to autism: an autobiography of sorts. When I was applying to grad school a couple of months ago, one of the schools asked me to submit a 5-6 page autobiography chronicling the experiences that led to my decision to pursue education. I think anyone interested in autism would benefit from my story.

As all my fellow second graders were playing outside, I sat with Ed, a special-needs child the same age as me, and voluntarily helped him with his reading comprehension by reading with him. I vividly remember the sense of joy I felt when he pronounced the word ‘embarrassed’ correctly. I had a soft spot for Ed; I saw myself in him. We were both socially awkward, we both experienced bullying, and we both had single-minded interests. I was a special-needs child too, diagnosed with high-functioning autism.

While I was lucky enough to reap the benefits of inclusion throughout my school years and could’ve easily been in a worse situation, growing up in the special education system left me feeling inferior and eerily voiceless. Even after making significant progress, these are feelings that I continue to struggle with into adulthood. The distance that I felt from my peers for being different was enough for me to feel disempowered by a system that was ironically designed to help me. Despite the best intentions of my teachers, I sensed early on that they were working in a system that assumed that people like myself were broken and I concluded that my sense of empowerment had to come from somewhere else. I’ve never felt truly accepted for my disability in my school years, even though I was considered high functioning and appeared normal enough. At best, I felt that people were projecting career paths onto me; it took some time for my parents to accept the fact that I abandoned the idea of becoming an engineer or a mathematician, even as my math grades started dropping in high school. I only accepted engineering and math as options because they were convenient but the ambition was never truly mine. It was just something else that others wanted for me.

The first serious career idea I’ve ever had was becoming a musician. I took a lot of pride in this choice because it was the first decision that, after years of feeling voiceless and controlled, came completely from within. I made it a priority to know as much about music as possible. I learned how to play the piano and studied music theory, composition, music history, audio engineering, sound synthesis, and even dabbled in more obscure topics such as the physics of sound, the mathematics behind music theory, and aesthetics. After deeply immersing myself in a mostly independent study of music since I was 15 years old, I realized that becoming a professional musician is an unrealistic career choice for me not only because the music industry is in poor shape but also because I realized that the projects that I’d be most passionate about will leave me as a starving artist. However, I don’t consider it to be a waste of time. Other than simply having deep knowledge of something that I love, the greater purpose of my study of music was to give me a sense of self-empowerment and to help cultivate the intellectual vigor and curiosity to dive into other topics; I managed to foster creativity and a love of learning within myself by letting myself be. I continue to write music and plan to keep it that way.

After graduating from college, I had spare time in between graduation and my first job. Having had the silly idea of writing an autobiography at age 21, I decided to research autism in a (semi-misguided) venture to learn more about myself. I came upon endless resources but most of them referred to autism as a medical condition and the stories I found stirred up pity in the reader and shined a rosy but nauseating light on the autistic. I kept digging until I stumbled upon egalitarian concepts like neurodiversity and disability rights. I kept wondering why I’ve never been challenged to consider these perspectives. Were my teachers ignorant of them? Did they think that my ‘condition’ would somehow hinder my ability to understand them? Or was it because I simply didn’t seek them out before? And if it’s because I didn’t seek them out, why didn’t I? My research had shifted my thinking of autism drastically. It appeared less as a medical condition and more as a reflection of societal values.

I managed to keep my autism not just hidden but also pushed into the back of my mind as if it were a secret that I’m trying to keep from myself. Keeping it hidden meant not complaining in the face of sensory overload and pretending I understand subtle social cues and memes when I actually don’t. This may have led me to experience confusion and anxiety but it was preferable to admitting or showing that I was autistic. Coming to terms with it has been an ongoing process. I still sometimes wonder if I could ever be taken seriously as an autistic person. I realize, however, that publicly admitting that I’m autistic, given the stigma surrounding it, is a radical act in which I’m usually greeted with either ostracism or condescension.

I consider myself very lucky for an autistic person; very few of us feel like our voice matters and now that I have my own voice and the confidence to go with it, I want to use it well. The first time I got to use that voice was when I started working for [redacted for this blog post], an organization that provides many kinds of support and services to disabled people. I work in their [redacted] department, which specializes in work with autistic adults, as a lead mentor, helping our participants attend college, integrate into the community, etc. I discovered a diversity of people of varying ability and intelligence; I quickly learned that I had to develop a different approach with everyone. Some were more independent than others, some needed more help with interacting with people than others, and some appreciated my avant-garde punctuation marks more than others. This helped me realize that autism manifests differently in everyone and, like neurotypical people, developing a blanket approach to working with autistic people would not work, despite them falling under the same label and having similar issues.

I was slowly and unwittingly building the skills necessary to become a good teacher through bouts of tutoring and my work as a mentor at [redacted]. I realized that I wanted to be a teacher when I became appointed [redacted]’s first in-house private music teacher earlier this year and started giving lessons to a young man who receives services from us. I started to experience the same excitement whenever he had fun playing the keyboard that I did whenever Ed pronounced a word like ‘embarrassed’ correctly.

After reflecting on being autistic in this society and having a full-time job working with other disabled people, I’ve come to view the label ‘special ed’ as problematic. It is a byproduct of power hierarchies that favor those who are neurotypical or able-bodied. My experience growing up in the special education system, however, puts me in a position to be more sensitive to the needs of the disempowered children in my classroom, special ed students or otherwise, than an average teacher. One of my hopes as an educator is to address such issues in my lesson plans. Children are the best age group to tackle because they have no such values ingrained into them yet; feelings of hatred and discrimination are learned traits. The childhood stage is the best time to address issues of social justice; the concept of social justice becomes harder to grasp as one gets older and develops prejudice towards certain groups of people. Childhood is also the best time to nurture creativity. Cultivating my creative instincts is one of the best decisions I have ever made for myself, despite starting in my teens instead of childhood, and I’d be a different person without them; they have allowed me to transcend the tunnel vision mindset that a lot of people have, disabled or not. Even if I fail to address issues of social justice in the classroom, if I could nurture creativity, I’d say I’m successful.

Inclusion does not work in a bubble. It may be designed with the best intentions in mind but it does not shield autistic and other special-needs students from the negativity and stigma surrounding them in the media. I understand that reducing stigma against disability is a tall order but I want to do everything I can to combat it and the best way I could do it is to be an example.

I didn’t get in the school.

Living Life or Living on Life Support?: On Being A Direct Support Worker and What Goes on In This World

After being let go from my job as a direct support professional (henceforth, DSP), I have a chance to step back and critically think about what I’ve been doing for all the time that I didn’t blog. This is the culmination of three years of work so it may be a little long. Call it an exposé.

Introduction

Although anyone with a disability is eligible for these services, the work is mainly geared towards people who were in institutions like Willowbrook where disabled people were poorly treated and cut off from the rest of the world. The history of disability in the United States is dark and revolting, full of terrible housing conditions, inhumane treatment, and quackish ‘cures,’ and it wasn’t until the 1980s when anything resembling a civil rights movement for the disabled started. To learn more about this dark history, I urge you to read Robert Whitaker’s Mad in America (it’s more about mental illness but those who we call disabled today could’ve easily been lumped into the ‘mentally ill’ category back then). We as a society are becoming more accepting of disability but as I’ve seen on the job, some of the residue of our dark history remains.

For those who don’t know what a DSP is, they provide services directly to disabled people of all kinds. The nature of the services vary depending on the individual’s needs and their agency but broadly speaking, the DSP’s job is to provide a crutch for the participant/client/whatever-term-the-agency-uses and help them perform whatever daily living activities they need help in. For example, if they have difficulty navigating the subway system, you help them with that. DSPs may also help them become part of the community by doing fun things with them. I once went to a baseball game with a participant and I brought another to my place and jammed with him. DSPs also act as advocates, liaising with members of the community to meet their participant’s needs. The participant is the boss; it’s an empowering dynamic for them and it gives them a chance to experience independent living. It sounds counterintuitive but in some cases, their time with a DSP is ironically their most free. It’s important to know when to step in and when to step back and the best DSPs often times don’t look like they’re ‘working.’

I had been doing this for nearly three years and received a lot of recognition for it. I’ve won awards, been moved up to a lead role, making me one of the higher paid DSPs, and became considered one of the best in the organization. During the few times a month that I’m in the office, I commanded respect almost too easily. Sometimes I wondered if they just stroked my ego to encourage me to do all the work, which is likely because since my departure two weeks ago, no one that I thought I became friendly with has reached out to check in on me, not even families. It’s also possible that they’re used to DSPs leaving, including the good ones.

Rich in Our Hearts, Broke in Our Pockets

The direct support field is plagued with massive turnover rates, mostly because for what the job entails, the pay is abysmal. Remember when I said I was one of the higher paid DSPs? I was only paid $13/hr by the time I left. It’s better than the average $10.23/hr that most others make but even my wage was not livable – at least in NYC – unless I regularly worked overtime. And this isn’t a case of upper management being money-grubbers.

An agency of this sort, along with other non-profits, is funded mostly by the government. We have fundraising but 80% of our money comes from Medicaid and the salaries all across the company are sad. My supervisor only made $40K. And because we’re funded by Medicaid, we have to work within the system, which may result in us playing stupid bureaucratic games. Although we have room to experiment with novel programs, I sometimes wonder how we’d function if Medicaid didn’t have control over virtually everything we do. Either way, the organization constantly faces money problems, which leads to downsizing and cutting corners, which leads to reduction in quality of services, which will eventually lead to the agency’s demise.

Supervisors (we call them coordinators here) face a catch-22. They want the best and the smartest DSPs to stay but realistically, because coordinators cannot provide them with any incentive to stay for longer than a few years, the better DSPs either move up in the organization or get fed up and leave. It can be disconcerting for the participants who would then have to go through the process of getting comfortable with a new DSP every time their old one leaves the job.

Judging from the work culture at my agency, people who enter and do well in this kind of work have a very specific personality. A coworker once described everyone in the organization as “rich in our hearts but broke in our pockets.” Nearly everyone at my agency has an upbeat personality. They’re smart but don’t take themselves too seriously. Meetings were frequently peppered with laughter. My supervisor and I joked around a lot. And we still got shit done. It felt less like a faceless corporation and more like a closely-knit community of like-minded people striving towards the same thing. The work environment, however, is very delicate.

Play With Shit And You’ll Get Shit On You

If a DSP calls in sick, the coordinator has to either find a temporary replacement quickly or perform direct support work themselves, the latter of which may throw off their schedule. Being reliable and flexible when a DSP calls out is a huge, unspoken part of the job, no matter your job title, and will earn you respect very quickly. Do this too much, however, and you’ll become overworked; coordinators will figure out that they can rely on you and will consistently go to you if something happens. It’s hard having a good reputation.

Since the human factor is involved in this work and because the most valuable currency in this field is care, it can be emotionally difficult to turn down extra work, especially if you have a good reputation and are eager to live up to that. We all want to do good things for others but a good human services organization can exploit this fact to get their employees to take on more work than they should. It’s not like turning down a project. Unless you’re a psychopath or genuinely overworked, turning down an extra shift in this job can feel a bit like abandoning someone. Maybe I’m just sensitive.

As with any other human services type of job, getting too close with your participants can be dangerous, as their problems will feel like your own. I worked with someone who was going through some serious family issues throughout October and because I had a closer relationship with this participant than any other DSP, I was given the hard job of keeping his already-broken family together (I’ll write about this later). I started trying to detach myself from the situation two weeks in because not only was I working more than I should but also the situation was starting to affect my mental state, which then affected my work performance.

Do the Participants Really Benefit?

As I said, we get most of our funding from Medicaid so our work is largely bound to a faceless bureaucratic system. We have to display our progress to justify the flow of funds and in order to do that, we need to quantify our work, never mind the fact that quantifying this kind of work is preposterous. For example, my organization has what’s considered an exceptional employment program and they may brag about job placement and retention rates among our participants. It’s great and all; it’s more than can be said for the huge swaths of the disabled population that either are unemployed or have difficulty holding down a job. But what really goes on behind the numbers?

Our employment program is divided into two departments: The Employment department finds and sometimes customizes jobs for the participants and the SEMP (short for Supported Employment) department works to help the employed participants keep their jobs. My girlfriend works in SEMP as a SEMP Counselor. Her job is to manage a caseload of participants of varying ages who are employed. She visits them while they work once every two weeks to check in on them and to speak with their supervisors to resolve any issues that may arise on the job concerning her participants. In addition, if one of her participants expresses frustration with the job or a desire to quit, she has to counsel them and get them to stay in their job. I should add that her participants usually perform menial jobs such as pushing shopping carts, shredding paper, wiping tables, delivery, and other small, repetitive jobs that anyone would find depressing. Only one person on her caseload actually likes their job. While counseling may be necessary at times, she doesn’t get to challenge whether or not this is the kind of work they really wanted in the first place; her job is to placate them into staying, which keeps our agency’s job retention rates high. If our job is to empower them, then why are we cajoling them into staying in a dead-end job? Is it all for show?

It may have more to do with the fact that we are living in a time when disability is starting to lose its stigma. The older participants accept the work because they believe that there’s nothing else out there for them due to the years of oppression that they have faced. They are thankful to have any kind of work at all, no matter how menial it is. Maybe my girlfriend and I are both just high on youth and have our heads in the clouds but we believe that all of our participants are capable of more than dead-end work.

We do have younger participants in their twenties in our agency who are very smart and feel more capable of success in their chosen fields. They have come of age in a time when disability wasn’t as stigmatized as it was for participants who are in their fifties, who grew up when ideas like the refrigerator mother theory were popular. Thankfully, I got to work mostly with younger participants. I preferred working with them to working with the older ones; they were more impressionable and I felt like I still had a chance to help them become something great, rather than just placating them and helping them get by.

Conclusion and Comments to All in the Field

Direct support work is a flawed system but it’s the least flawed. It’s a better approach to aiding disabled people than, say, putting them in institutions or group homes, shielding them from the world, and not giving them a chance to simply exist on their own terms. DSPs, along with special educators, social workers and other such people, are working to foster acceptance of disabled people. A good DSP, rather than shielding them from failure, gives their participants room to fail and learn from it. A good DSP gives life, not just life support.

If you want to pursue this work, the best advice I can offer is to maintain your personal sanity and to advocate for yourself as a worker. Don’t take on more work than you need to. Even if they say it’s an emergency, they can find someone else. Yes, the participants are important but if you feel like you can’t advocate for yourself, how could you possibly feel empowered to advocate for someone else? After working overtime for a few months straight, I became frustrated with the job and slipped as a worker. If you are of sound mind, you can do this job well but if you feel like you need a vacation, I highly urge you to take one. While this is true of all jobs, the importance of time off increases here, since you are working with people and they will pick up on and become affected by your mood. I don’t care if your supervisors give you a hard time about it. If they do, let them fire you and go find a different agency.

You may need training depending on what state you live in (I know California requires it) but in New York State, it’s possible to get started with just a high school diploma and a good heart.

If you hold a high position in an organization that employs DSPs, I challenge you to institute a sabbatical for them, in which they take at least three weeks of paid time off per year. Due to our low wage, most of us cannot afford to take time off, even though we need it. The participants will benefit too; it’s best to spare them a DSP who needs a vacation and find a temporary replacement. It can be difficult finding a replacement but your DSP will come back rejuvenated and will most likely perform their job better. If a sabbatical is outside your agency’s means, try giving your best DSPs a salary instead of an hourly wage. That way, it will feel more like a real job and provide more incentive for them to stay for the long term. There’s no getting around it. If you don’t treat your DSPs well, your agency is for shit.

If you are the parent or caretaker of someone who receives services, give their DSP the benefit of the doubt, especially if they’re overworked. This may be a thankless job but it doesn’t have to be.

If you want to work with disability in the future, becoming a DSP is a great and easy way to get started. You’ll get a lot of hands-on experience and you’ll be more privy to what goes on in this population. It’s an especially good experience if you’re interested in social work or special education. I’ve seen and learned a lot and my experience in the direct support field will be part of the base that I build my career on.

A WORD FROM MY SPONSOR: Do you experience a lot of what I have outlined here as a worker – that is, frustration, feelings of futility and incompetence despite praise, etc.? Does your employer provide bootleg insurance or no insurance at all? Maybe free therapy is the way to go! Check out this resource from BetterHelp.