TW/CW: This post will discuss suicide, physical and sexual abuse, substance abuse, and interactions with law enforcement/authority. I will address these topics explicitly, as I feel that the information needs to be given directly.

This post is about what challenges emerge when autistics grow up. I know most people do not comprehend this reality, but autistic kids become autistic adults the moment they pass 18 years of age – whether we accept that fact or not. The problems are not going to get any smaller with age. It does not become easier to navigate the world as we get older. In fact, the unspoken rules, cues, and discrimination only increase and the cost of failure increases.

In this post I will refer back to the previous 3 posts regarding challenges and difficult conversations that need to be had with autistic students and children. The same conversations I discussed one earlier posts need to occur with adults, but it is always easier if we have these conversations with autistics while they are young.

The takeaway of this series of posts is as follows: We are often hesitant to talk about sex, suicide, menstruation, physical and sexual abuse, etc., because we are afraid to broach the topic with our autistic loved ones. We do not want to worry or scare them with these “icky” or seemingly inappropriate topics. Well, guess who is already worried and anxious about these things: your autistic loved ones. What we need to do is to be the “adult” and be willing to engage in these difficult conversations when our loved ones seek our help. We are doing our loved ones a favor by being honest, assertive, and direct; no matter how difficult or uncomfortable the topic of conversation may be.

An Educational Aside

So, I was speaking with a parent of an autistic student and they suggested I write a post about the conversations I have with students because I do not shy away from difficult or uncomfortable topics. I thought about what she said a lot and I realized I am unique among a lot of teachers because I am willing to talk about things like puberty, sexual orientation, CreepyPasta, depression, or suicide with students so long as the situation and conversation are appropriate. And I do it with a nonplussed expression that gives the students a sense of calm, or at least a perception that I am in control and not surprised by their questions (this video shows two great police interrogators doing exactly this).

I feel this is an overlooked yet important role for a teacher. Anytime I see students starting down a tough path I want to intervene before they go so far they reject outside help. In hindsight, I worry how some situations would have turn out had I not taken the time to help the students get a grasp on their own thoughts and feelings.

This is part 4 of a 3 part series on crucial conversations. See the first part here for a description of my approach and rationale for taking on these conversations, here for Part 2, and here for Part 3. Part 4 just kinda happened unexpectedly, much like the Spanish Inquisition.

Suicide

With regards to suicide, a recent paper came out from Sweden that pointed out that autistics are 9 times more likely to die of suicide than the general public (other studies came to more drastic conclusions). Furthermore, those with so-called “mild” autism and women/girls on the spectrum are more likely than boys or those with so-called “severe” autism to attempt suicide (get the paper here and a press release for the layperson reported on by Autistica UK here).

Now my earlier post on this topic covers how I handle these cases of suicidal ideation and talk regarding suicide, so I will not rehash those ideas here. I will explain a reality that I have recently realize I have taken for granted: Autistic people have a hard time trusting nonautistics, but when they do trust, it is a deep, meaningful relationship that lasts.

I occasionally receive phone calls from one of the students discussed in the previous post. Whenever he is extremely depressed and wanting to really hurt himself he sits down with his mother, puts the phone on speaker, and calls me. His mother sits and listens, but does not engage unless my student brings her in on the conversation.

We go through all the steps I described before. I listen. I listen a lot. I let him cry. EVERY time he shows emotion, I validate that emotion, and let him know that I do not judge him for feeling rage, anger, sadness, depression, anxiety, fear, etc. They are good emotions and need to be expressed. He needs to hear this, otherwise I would just be silent. I let this young man express himself and use me as a sounding board and safe place where he can work out his issues.

When I get together with this young man in person, the first hour is usually like the phone calls. He has a flattened affect, difficulty responding to stimuli and questions, etc. Then he lets out any anger he is feeling and frustration. After a while (~45 min), he is able to talk out his issues and we can get on to topics of conversation that he enjoys (i.e., The Eleventh Doctor or how to train his cats to bite his brother but not him).

I have told him and his mother that I am available 24 hours a day. I even have their phone number programmed into my phone as an emergency bypass so they don’t get blocked by my “do no disturb” filter at night.

I thought this was a unique, isolated situation unique to this student until I noticed my mother has the same thing happen to her. She receives phone calls from depressed former students. She handles them the same way I do. She steps away from noise so she can give full attention, she listens, and she asks basic questions to guide these students to a better spot.

What I think is important here is the fact that in both cases of these young men calling myself and my mother, is not actually that they call us. It is that they know deep down we can be trusted and they can talk to us about anything and we will help them without agenda or frustration at them. We will not contribute to their emotional stress and we will not try to solve their problems for them. We will just listen and empower them to come to the right solution for them.

These former students of ours feel they can communicate their emotions to us honestly and we will still respect and love them after the conversation – however unpleasant it may be.

I feel this is a critical point because these trusting relationships were built early. In my case elementary school and in my mother’s case she bonds with students in intermediate school / junior high. These relationships last for years, decades even. What floors me is that after all that time, students that call my mother still have not found other people that they trust anywhere nearly as much as her.

That means she is the only one the students feel comfortable talking to about their problems. Think about that for a second. You are out of high school, but one of your 7th grade teacher’s aides is the only one you feel you can talk to about your problems. That’s a rough situation.

Physical and Sexual Abuse

I have gone into this before but I am going to be a bit more specific regarding adulthood and physical/sexual abuse. The graphic below is a quick primer on the manner by which disabled and autistic people may potentially be abused by their loved ones in partner relationships.

So far as statistics are concerned, reports range from 50-70% of adult autistics have been physically or emotionally abused by someone they trust, and 90% sexually abused in some form. And these are numbers for adult autistics-not kids (those numbers are even higher). A 2014 survey in Britain reported the following (and it is important to note this is likely a vast underestimation of the frequency).

Half of 1,300 sufferers questioned by NAS said they had been abused by someone who they thought of as a friend, 37% said they had been manipulated to do something they didn’t want to do by these so-called friends and 44% said fear of abuse or harassment led them to not want to leave the house. Meanwhile a quarter of those polled said they have had their money or possessions stolen.

This goes along with what I reported in the previous posts on this topic but I will reiterate here:

More than 90 percent of people with developmental disabilities will experience sexual abuse at some point in their lives. Forty-nine percent will experience 10 or more abusive incidents (Valenti-Hein & Schwartz, 1995). Other studies suggest that 39 to 68 percent of girls and 16 to 30 percent of boys will be sexually abused before their eighteenth birthday. The likelihood of rape is staggering: 15,000 to 19,000 of people with developmental disabilities are raped each year in the United States (Sobsey, 1994).

…

People with developmental disabilities may not realize that sexual abuse is abusive, unusual or illegal. Consequently, they may never tell anyone about sexually abusive situations. People with and without disabilities are often fearful to openly talk about such painful experiences due to the risk of not being believed or taken seriously. They typically learn not to question caregivers or others in authority. Sadly, these authority figures are often the ones committing the abuse. Many special education programs have encouraged students to be compliant in a wide range of life activities, ultimately increasing the child’s vulnerability to abuse (Turnbull, et.al., 1994).

If we do not teach our autistic students and children how to care for themselves and advocate for themselves, this cycle of abuse will not stop at age 18.

Just the other day on twitter I was conversing with some autistic folks regarding physical and sexual abuse from their spouses/partners. I am not going to link to it since some of them have private accounts and I am going to respect their privacy and avoid accidentally doxxing them. Resoundingly, they communicated that they felt personally responsible for the abuse they were receiving, and despite being angry at the perpetrator, did not assume it was the abusers fault. They also communicated that they were lucky to find anyone willing to love them and it was their responsibility to stay with that person and give them the benefit of the doubt.

Some of us tried to convince these individuals that they were not responsible for their being harmed, to little avail as their emotional blame was already well established.

This is a problem that is not going to go away. We MUST advocate for our autistic loved ones and teach them what others can and cannot do to them. Otherwise the cycle of abuse will just keep turning over.

Again, I am going to harangue on communication.

By our actions as teachers in school we unintentionally teach autistics that their opinions and reports and complaints are less valid than those of their nonautistic peers. So they learn the survival strategy of internalizing everything bad that happens. They blame themselves. This is what we have to fix.

I approach autistic people the same way I approach everyone, trust but verify. I assume they are telling the truth, at least from their perspective. I want them to know I believe them so long as they tell the truth. I do not question them. I do not twist their words. I believe them.

It is precisely because I believe my autistic friends are telling the truth they are willing and able to tell me the whole truth, even inconvenient and unpleasant bits.

Substance Abuse

Self medication is an issue for all populations with disabilities. Autism is not an exception. Unfortunately the vast majority of the literature available on the subject is asking the wrong question. Scientists are trying to answer the following: “Why does autism make people prone to become addicts?”

I think that is the wrong question. It comes with a ton of loaded assumptions.

I frame another question that does not have as many troublesome assumptions: “Why do autistics seek out addicting substances?”

I think the answer to this question is exactly the same answer as for the rest of us. We seek out addicting substances because they offer a reduction anxiety, they release inhibitions, and they can be relaxing. In extreme cases, for an escape from reality.

Twin studies in Australia suggest that, like suicide, it is actually individuals that show “milder” autistic traits (autistic women and so-called “high functioning”/”mild” autistic men) tend to abuse alcohol, nicotine, and marijuana more than the general population (or their non-autistic twin in this study). Those with more profound autistic symptoms as reported in these studies tend to abuse substances less, but research suggests this is likely either due to decreased social access to alcohol, tobacco, or drugs, or else due to the need to live in a supervised setting wherein access is explicitly controlled or outright prohibited. Interestingly, the researchers found that autism had nothing to do with whether drugs or alcohol were experimented with in the first place, but rather the patterns in the data suggest that autistics have an easier time becoming addicted to substances of abuse. Scientists have posited that this is due to some addictive personality traits, some form of compulsive behavior, or just because they receive a greater reprieve from anxiety than the average nonautistic person does. To date there is still no established answer, and my guess is that no-one has actually surveyed autistics regarding this question.

Interestingly, it is hard to find information that is reliable about substance abuse within autism. But it is VERY easy to find rehab centers with wings designed to cater to the needs of the autistic addict as they detox (access to cognitive-behavioral-therapy, sensory accommodations, etc). This in itself tells me there is a larger problem of addiction in the autistic community than science has been able to ascertain.

So again..solutions. My opinion is that, again, no one has given the appropriate information to the autistics regarding drugs and alcohol and unfortunately talking about these things theoretically may not always answer autistics questions, but that shouldn’t stop us from trying and keeping communication going. We can always do our best to teach and help and inform. Just leaving the autistic to their own devices can no longer be an option. We need to break down the why on dangers associated with intoxicating substances. We often use scare tactics to dissuade alcohol, tobacco, and drug use with our youth, but we do not verify that these same lessons are heard by autistic or disabled populations. When we teach autistics about drug and alcohol use, we need to break our arguments down to explicit, step by step, nitty-gritty elements. Give the information to the autistic person, have a dialogue with them about their options, and then have confidence in them to back off and let them make their own, now informed, decisions.

Interactions with Authority/Law Enforcement

I have a few stories about my brother Kyle here to illustrate the importance of communication when interacting with law enforcement. To reiterate his background, Kyle was my twin brother. He was a nonverbal autistic that was perfectly able to function at school and home with a computer to speak for him. For more info please go and enjoy the blog posts under what I call the Kyle tag.

Kyle was generally compliant and fun-loving, but he was not slight in stature and if he got frustrated or agitated he would make a piercing medium-high pitched scream (loudly vocalizing EEEEEE!). He also would move around aggressively and lurch back and forth to get others out of his space. He never really hit people, he would pinch me and my mother on occasion, but more than anything he would actually pinch and bite himself on the arm. Hard. Basically he was much more willing to hurt himself than others. In fact, even when he was a child he was more willing to attack teachers if they were disciplining other students than if they were punishing him.

I am going to tell the stories of the two times Kyle was put in handcuffs. He was not an adult for either of these, but there are lessons we can extrapolate to the situation of autistic adults. Mostly regarding communication and how easy it was for Kyle to appear noncompliant, even when following directions to the “T”, simply because he was unable to verbally speak to the officers and he lacked access to his assistive technology.

The Public Library

The first time Kyle was handcuffed was when he was in 7th grade. He, my mom, and I would go to the library after school. Kyle would look at magazines and mom would give him space so he could be independent. I would go off and hunt down as many books as the library would let me check out and set myself down to start reading one of my new books.

On this particular day, Kyle deviated from his normal pattern. Instead of staying by the magazines like he always did, he went into one of the offices and started looking in one of the desk drawers. When he was told to stop what he was doing, he ignored the librarian and continued searching in the drawer. Because he was noncompliant, the police were called. When Kyle did not follow the officer’s instructions, he was handcuffed, and quietly led out the side door of the library. At this point Kyle did not make any sounds to indicate duress or anxiety. He just quietly allowed the officer to put on the handcuffs and then Kyle compliantly went with the police officer.

When they got Kyle into the police station (which shared a parking lot with the library, so this was a 2-minute walk max), they sat him down and started asking him questions. Every time they posed him a question he stood up and walked toward a computer that was on at another desk. They officers told him to come back and sit down, which he did. Every. Single. Time.

They finally got his lunch card that had his name on it and called the Junior High and spoke to the vice principal. The vice principal told them that Kyle was not the kind of kid to steal things from desk drawers and told the officers to go and find my mother, who would surely be in the library.

The police came over to the library and found my mother and asked if she was Kyle’s mother, she said yes and the officer told her that Kyle had been arrested and would she come over to the police department.

When they got over, Kyle tried to get mom to take off the handcuffs. When she asked the police officers, they said they could not take the cuffs off yet because Kyle still had to answer their questions. Mom, being mom, sat respectfully and watched the officers asking Kyle questions and Kyle immediately trying to go over to the computer to answer the questions, just to be told to sit down – which he did immediately and without visible frustration.

Mom finally told the police officers that Kyle could not talk and he was trying to answer the questions whenever he stood up because he talks using a computer (see here). They said they did not want him touching the computer because there was a work in progress on the screen. This was the mid 1990s, so computers were not as easy to alt-tab away from tasks as they are now.

After a bit more of the back and forth the officers closed out what was on the computer and opened a word processor. They asked Kyle his name and he walked over to the computer and tried to type handcuffed. He couldn’t, so they had to loosen his handcuffs. They asked him his name, and he typed it. They asked him his father’s name, and he typed it. They asked him his mother’s name and he turned around, looked at them like they were insane, and pointed to her as if to say, “ask her, she is right there” or else, “you already know that”. Regardless his communication, it was a hilariously sassy look he flashed them from what I am told.

After this back and forth and everyone stopped laughing after Kyle was pointing at mom rather than typing her name, the police took off his cuffs. Kyle hastily tried to grab mom’s hand and walk out, but mom told him he needed to stay and listen to the officers because they had to deal with a situation. The police had a long talk with Kyle about how he was never to do what he did ever again and property rights. Mom went into the school and made the classroom teacher change the system so Kyle did not have access to the treats himself any more–and they were moved out of that desk.

Now, the background to all of this was that in Brigham City at the time there had been a pretty big problem with drug addicts, often while high, going into businesses and rifling through desks to get cash. They would just come in, grab money, and leave.

Given this was 1994 and Kyle always had an eye for style, he was wearing very baggy pants and a big baggy, long, brightly colored T-shirt. That is to say, he dressed like a lot of these drug addicts did. Like this photo below from a story on the drug use culture in 1994 in fact…

Partly because he was a person that was usually smiling and he dressed fashionably, no one in public ever jumped to the conclusion that Kyle was anything other than normal. When I went out with him, usually people would avoid me and go talk to him. And he would just smile and enjoy the attention. After a while I would have to tell them he cannot talk, but only when they looked ready to take offense at his not answering.

Kyle, at school, was given rewards in the form of treats from a desk identical to the one in the library. Because he was trustworthy, the teachers would just send him over to the desk to open the drawer, and find the bag of treats and get one. He never went to the desk and took treats without permission. At least until that day in the library.

…can you see where I am going with this yet…

So when he was going through a desk he did not have permission to access, he was profiled as one of these drug users looking for money. And since he was not communicating with the police officers, they would have been in their right to put him in a cell rather than in a comfortable chair while they tried to figure out what was going on.

The great part of this story was what happened next. The mayor got wind of what happened and set up a “Handicap Awareness Fair” and mandated that all city employees attend and learn how to handle disabled people in the city.

This was a perfect scenario. No one messed up. Kyle was treated fairly and amicably given the situation. It could have gone sideways but it didn’t.

To help with scenarios like this, my mother got Kyle a laminated card he could carry in his wallet. The other side had his name, my parents’ info, and my aunt as an emergency contact. For Kyle the “I may recognize and use some sign language”, “I may be able to ‘talk’ with a computer”, and “I may appear agitated when I am frightened” were marked. Others could have been marked but my parents chose the essential ones.

My point with telling this story is that if this situation happened today, I doubt highly it would have gone so innocently. Brigham City in 1994 was (and still is) a very safe place and the police have reasonably little reason to fear violence. Back then it was virtually nil. So when Kyle was appearing to be noncompliant/noncooperative by standing up and trying to get to their computer, they just verbally redirected him and tried to figure out how to proceed.

In today’s world, given Kyle was not a small guy and he was rather strong, I perceive he would have gotten roughed up a little during the arrest and he would have been put in a cell as the police try to figure out why he is being uncooperative and apparently refusing to answering questions.

An Overreaction to an Unfair Teacher

The other time Kyle was put in handcuffs was at school. Kyle was in a life skills class to learn job skills and was doing an assignment that was transcription. The teacher told him what he had to do and gave him his assignment.

Kyle finished it with lightning speed because this assignment happened to require one of his skills. Typing. Kyle could type >100 words per minute using just 6 fingers and he rarely, if ever, misspelled a word once he had seen it once.

So Kyle finished rapidly. And as a result was given a lot more work to do. I have only heard, but as I heard it he was given a PILE of work that could be measured in centimeters, not merely pages. So Kyle flipped out.

He screamed. He started running in the room. He moved aggressively. At home we know these are behaviors he used to clear the area and give him space, but if you do not know what it looks like Kyle was going to start indiscriminately opening a can of whoop-ass.

This was sufficiently terrifying to those in the room that the peace officer assigned to the school came in and had to defuse the situation. This involved putting Kyle in handcuffs and trying to talk him down. When my mother came in to help, she saw the police officer and they both realized they knew each other (my sister used to babysit the police officer’s kids).

Kyle was still highly agitated so the police officer was hesitant when mom suggested he undo the handcuffs so she could calm Kyle down. When the police officer undid the handcuffs, Kyle’s hands shot up above his head in agitation and mom had to help him calm himself down by gently touching his hands and speaking to him in a soothing voice.

The police officer was amazed at how quickly Kyle calmed down. The officer was amazed as he, legitimately, had perceived Kyle as a threat that needed to be forcibly restrained by handcuffs to preserve the safety of those in the room (again, he was not wrong to do this). The police officer had my mother show him what she was doing so he could remember those tricks if they were ever needed again.

Again, this was a perfect scenario. No one messed up. We were not angry Kyle was handcuffed. He appeared to be very dangerous and a threat so the office acted with appropriate restraint. The officer did not know him well enough to know which of Kyle’s behaviors were “back off” behaviors and which behaviors were actually aggressive.

These anecdotes get to what we are seeing in the news in 2017. With Kyle and an idyllic Brigham City of the time, both of Kyle’s interactions with the police ended up as ideal scenarios. That world of the past does not exist any more. Both civilians and police live in a heightened state of anxiety that leads to poor, impulsive choices, underscoring the need for us to help teach our autistic loved ones how to act in these stressful situations involving the police.

My solution, not to kick the dead horse some more, is communication. There is a movement afoot to teach peace officers how to communicate with autistics and how to correctly interpret their actions. We need to also teach autistics how to communicate with police and other authority figures. This can take the form of scripts, a card like Kyle had, or just practice repeatedly in real world situations until truly functional communication come naturally to the autistic person.

Conclusions

Basically, autistic children grow into autistic adults. Say that over and over until it sinks in. Unfortunately, the challenges of life and difficulty in necessary choices, independence, and social interaction become more complicated, more difficult, and answers are far less straight forward.

My solution to all problems is to build relationships early and provide education. As teachers and caregivers, we need to make sure our autistic students and autistic loved ones know they can TRUST us to have their needs and their best interests at heart. That way they know they can ask for help if they need it. And if they do not need help, we will get out of their way and let them grow up as they see fit.

And beyond everything else.

Help our autistic students and loved ones know how to effectively communicate their thoughts, needs, desires, and experiences. Then believe and respect their communication.

For anyone wanting to know more about autism as experienced by autistic adults, I recommend looking at the #actuallyautistic hashtags on Twitter and Facebook.

Please just read and soak in their opinions, challenges, and successes rather than engaging directly. It is a very different perspective on autism than that you see anywhere else on the internet or in advocacy organizations.

Note: The autistic twitter and Facebook communities also like to preserve the #actuallyautistic hashtag for use by autistics, so please respect their convention. They will interact with nonautistics using the #autism or #autistic hashtags.

The takeaway of this series of posts is as follows: We are often hesitant to talk about sex, suicide, menstruation, physical and sexual abuse, etc., because we are afraid to broach the topic with our autistic loved ones. We do not want to worry or scare them with these “icky” or seemingly inappropriate topics. Well, guess who is already worried and anxious about these things: your autistic loved ones. What we need to do is to be the “adult” and be willing to engage in these difficult conversations when our loved ones seek our help. We are doing our loved ones a favor by being honest, assertive, and direct; no matter how difficult or uncomfortable the topic of conversation may be.