Parenting Kids With Disabilities: How to Get Through Tough Times

Shannon Des Roches Rosa
www.squidalicious.com

Content note: This article discusses abuse and murder.

Photo © Steve Silberman
[image: a white woman, standing behind a white teen boy
with brown curly short hair. He is looking at the camera.
Her arms are over his shoulder, his arms are up
and tickling under her chin.]

When parents like me talk about our kids with disabilities and intense support needs, we have to be thoughtful. We need to make it quite clear that our kids are much-loved and very awesome human beings. We should never, ever state or imply that any challenges we face as a parent are our children's fault. We need to handle their privacy with delicacy. And we shouldn't accidentally enable disrespect towards children who are already too-frequent magnets for morbid fascination, and pity.

But we do need to talk, because our parenting gig is not like other parenting gigs. It just isn't. We, our kids, and our families need different supports than families whose kids don't have disabilities, and we often need a lot of them. Sometimes we're not always sure where to find those supports, or even aware of available supports; sometimes we're ashamed to pursue the supports we and our kids need. And not having the supports we need for the best quality of life possible can lead to unnecessary hardship for everyone involved.

So, let's talk about what parents like us need, and especially how to get what we need. But first, I need to be forthright on one matter: In no way does lack of services excuse harming our children. Ever.

People with intensive support needs deserve sufficient resources, and so do their families. When these services are minimal or unavailable, that is a large-scale failure on our society's part. However, insufficient resources don't explain or justify murder of disabled children, because such crimes—which are also, frighteningly, not rare—do not actually have lack of services in common. So please don't buy into or spread the dangerous message that if parents don't get enough services, they might kill their autistic or disabled child.

Instead, parents—like me, like you—need to hear that it's not a failure or shameful to ask for help, and we need to feel safe about doing so. For our own sake, of course, and because reaching out also protects our kids.

Being in crisis is not the same as being a failure. Nor is it a personal failure to admit you and your child need help. So we need to work past fear and misinformation, and get educated about what our support options are, both during emergencies, and in general. Misinformation can lead to tragedies, as when parents absorb media-propelled myths that it more understandable for a mother to try to kill her child than to call Child Protective Services (CPS) on herself if she's thinking about harming that child. These dangerous myths sometimes persist because parents don't actually understand the role of CPS in protecting both children and families, nor are they aware of emergency services or rights-based services that were always available to them, if they'd known or been told where to look.

I spoke to Dori Tanaka, Family Resource Specialist Coordinator at Support for Families in San Francisco, who says:

"While contacting CPS is perceived by many families as a negative, it can help families access emergency services. Once CPS is involved, they may be able to assist families with support to get through a crisis. If possible, CPS's goal is the reunification of the family. 

"Unfortunately, it would be better if families did not have to resort to using CPS services; it would be better if services that would help them in caring for their children were easier to access. [But] many parents are often unaware of resources like Support for Families (and its local sister agencies) that help San Francisco families of kids with disabilities navigate IEPs, home health care, childcare access, and insurance scenarios -- services that can help prevent getting to that crisis point in the first place."

But avoiding parenting crises isn't just about services. We also need to be thoughtful and compassionate in how we approach our parenting, because our kids do not exist in a vacuum. They have a relationship with us, they react to us, and if our behavior and parenting choices do not respect our kids' needs and choices, then we parents can actually be the main problem in our kids' lives.
Especially when, as with autistic kids like my son, so many treatments and approaches and interventions are based on "normalizing." If we prioritize compliance and obedience, if we do not allow that autistic people have autistic brains and autistic learning styles, and are ill-served by forcing them to learn in non-autistic ways, that can lead to trouble.

How else can you work on improving your outlook and attitude as a parent? By finding a supportive community. Community matters, when it comes to feeling supported as a parent. It matters a lot. Both online community, and IRL.

You need to be selective, though. You need to connect and talk with people and parents who are good listeners, and avoid those who aren't. Once, when I was feeling particularly overwhelmed, I managed to squeak in a night out with a friend. On the ride home, I confided in her about some of my parenting worries. She responded by telling me about a friend whose children died from degenerative diseases, implying that by comparison I didn't have anything to worry about. I certainly never confided in her again.

Because when when any of us are floundering, depressed, or in crisis, it doesn't matter if other people have things harder. They are not living our lives. We are. So find someone who gets you, who wants to be around you, and/or who wants to listen (and to whom you will return the courtesy, yes?). Then cut the scoffers or other unfriendlies out. Your time and energy are precious, so don't waste them on people who treat you and your heart thoughtlessly.

Unsurprisingly, many of my friends are parents of kids with disabilities, and/or autistic and/or disabled themselves. When we talk, we talk—and talk and talk and talk. We discuss things we would never, ever say in public, out of respect for our kids and also for the reasons listed in this essay's first paragraph.  We coach and advise each other. And we talk about silly things that are totally unrelated to our kids, because all parenting all the time gets old really quickly. It's all cathartic, it's all fair, and it's all necessary. So try to find your people. Either IRL or online is fine, and anyone who tries to tell you that online community isn't real is living in 1994.

A last, much-appreciated resource for me (as I've written many times) is the writings and insights of autistic adults. Parents and professionals are capable of beautiful observations and crucial recommendations, but there is no substitute for having lived an autistic life. Consider also my personal experience: professionals were the ones who lobbied for my son to have early intervention because otherwise he might "never develop" life skills—and left me a panicked, jibbering wreck; autistic people are the ones who soothed my soul by reassuring me that my son's developmental trajectory was his own, and that, like them, he's probably going to be a life-long-learner and developer.

And of course, my son is also good at teaching me what he needs, as long as I'm paying attention. Our relationship is one of affection and synergy rather than one-sided deficit-battling. He is not my precious special angel meant to teach me life lessons, but rather an embodiment of self-advocacy and grace despite the crap that life, silly people, and even well-meaning people constantly throw at him due to his disability. I hope I will always have his back in the way he deserves, and in the way he has mine. Even when things are tough for either of us.

A final reminder about healthy attitudes towards parenting kids with disabilities, from autistic autism parent Ally Grace. I think we all could all use such a reminder. Possibly daily. Possibly hourly.

"My children owe me nothing. I brought them into the world, which was my choice and is my responsibility now. I will unconditionally embrace who they are. Because that's my job. And because that is my ethical obligation to my children, who are fellow and equal human beings. Whatever their neurological makeup."

Please know that I am not saying every parenting crisis of ours is fixable, because that also would be unfair and untrue. But there are tools, there are people, there is information that may prevent crises from happening, and can also help us find our way to the other side when crises do happen. We parents of kids with disabilities both deserve and need to know more, and feel better, about our options.

----

Resources

• The Autistic Self Advocacy Network's Anti-Filicide Toolkit autisticadvocacy.org/wp-content/uploads/2015/01/ASAN-Anti-Filicide-Toolkit-Complete.pdf
• The Autistic Self Advocacy Network's Autism and Safety Toolkit: autisticadvocacy.org/wp-content/uploads/2017/11/Autism-and-Safety-Pt-3.pdf
• Eleven Ways You Can Make Your Autistic Child's Life Easier: http://www.thinkingautismguide.com/2017/04/eleven-ways-you-can-make-your-autistic.html
• Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices: http://www.thinkingautismguide.com/2016/08/when-autistic-children-are-aggressive.html

----

A version of this essay was formerly published at BlogHer.com

Read More

Coping with a Crisis When You Have Unreliable or Intermittent Speech

Maxfield Sparrow
Unstrangemind.com

Photo © Marcia Furman | Flickr/Creative Commons
[image: White person with tousled medium brown hair slumped over at a restaurant table,
face hidden, with sunglasses resting on the top of their head and hair.]

Autistic people already know how alarming and overwhelming a crisis can be. But when we have unreliable and intermittent speech, a crisis can go beyond stressful, even becoming deadly. I’d like to share a few tips on how I’ve managed to stay alive despite intermittent speech.

Sections:

• What is unreliable and intermittent speech?
• People With unreliable and intermittent speech can help others in emergencies
• What to do when you are in a crisis and need to contact someone 
• Text someone you know or a professional helper
• Use TTY/Relay to contact someone
• Use an AAC over the telephone
• Use the Text Crisis Line
• How to interact with others during a crisis
• Decide whether and how to disclose your autism
• Communicating With Others
• Use an AAC device or app
• Use sign language
• Use a white board
• Use the emergency chat app
• How to remember these options in a crisis
• Make a folder on your phone or tablet
• Add the crisis text line to your contact list
• Make a reminder image on your lock screen or background
• Make a personal checklist to troubleshoot problems

What is Unreliable and Intermittent Speech?

First, a bit of explanation for those unfamiliar with these terms. People sometimes talk about Autistic people as “verbal” or “nonverbal” but there are a couple of reasons why I don’t embrace that language. One big reason is that “verbal” means “of words” rather than “of speech.”  I know plenty of Autistics who don’t speak at all but type with beautifully expressive, often highly poetic, language. To call someone who writes more lyrically than 99% of the population “nonverbal” is so incorrect. To call anyone at all who types or writes or points or otherwise uses language to communicate “nonverbal” is so insulting.

An even bigger reason why I don’t use the language of verbal/nonverbal is because it implies that speech is like a light switch: either on or off. Many of us do not fit into that on/off model at all.

Unreliable speech is when a person can speak but the words do not always match what the person is trying to say.

One example of unreliable speech comes from Emma Zurcher-Long’s blog, Emma’s Hope Book. Emma calls fireworks “motorcycle bubbles” and stars “sorry bubbles” which is lovely and poetic (if cryptic to those who don’t know Emma’s language.)

But her speech becomes unreliable in certain situations, particularly with multiple choice questions. Emma’s mother wrote a blog entry about Emma struggling with a standardized assessment test. “I read the facts to Emma and then asked her to give me the answers by saying the correct answer out loud. This is how the test is typically done. Emma chose the last choice to each question every single time,” Ariane writes.

Imagine a crisis situation with a person who can only repeat the last option given. “Do you want to tell me what you are doing here or do you want to go to jail?” “Go to jail.”

Intermittent speech is when a person can speak sometimes but is unable to speak at other times. Sometimes the inability to speak is due to illness or stress (conditions often present during a crisis!) and sometimes speech comes and goes but no one knows why. Sometimes even the person with intermittent speech does not know why they cannot speak sometimes.

I have intermittent speech and that’s why I can share tips with you: I have lived experience with being in crisis situations without the ability to speak. Sometimes people are surprised that I cannot speak because they have heard me speak very well before that moment when I cannot speak. Sometimes people do not believe that I am unable to speak because I can speak so fluently at other times.

It is important to believe people when they are unable to speak. I know college professors and graduate students who are able to teach classes, using their voice to speak, but sometimes cannot utter a single word. When we are unable to speak it might indicate that something is terribly wrong, but that is not always the case.

For example, Alyssa Hillary is a graduate student with echolalia and intermittent speech. They write about interacting with the other members of their college Ultimate Frisbee Team, “It took some time for them to figure out that I really do understand when I should say a thing and what I should say, I'm just not always capable of doing so (it took until I managed to explain this, which it doesn't occur to me to do except right after this happens- you know, while I'm probably still not able to speak?”

People with unreliable and intermittent speech are clearly not “nonverbal” or even “non-speaking,” so we need to have language for how speech shows up in our lives.

People With Unreliable and Intermittent Speech Can Help Others in Emergencies

Just because we can’t always communicate with our voices doesn’t mean we can’t help people get help during emergencies. I have found that it can be easier to help others in crisis than to help myself because I am much calmer if it is someone else’s emergency. I might go into a meltdown because I can’t find the can opener but I was completely calm and knew exactly what to do to help when I witness a car crash right in front of me while I was waiting for the bus.

Aaron Cahal, who has unreliable speech, was able to use Facebook to save the life of a drowning child. First Aaron texted his dad, “I hear a scary cry.” Aaron’s dad started looking for Aaron, not realizing his 23-year-old son had already left the house and was moving toward the sound. Aaron took pictures of the house where he heard the sounds from and then messaged local police through their Facebook account, writing, “big crying people scary people.”

While emergency responders weren’t sure at first where to send help, they took Aaron’s message seriously. Someone else pulled the child out of the water and began administering CPR, but emergency vehicles were able to arrive quickly because of Aaron’s alert. Aaron Cahill’s story shows the importance of cell phones for those of us with unreliable and intermittent speech. We can save the lives of ourselves and others if we have a way to communicate. Cell phones are marvelous technology and very helpful assistive devices.

What to Do When You Are in a Crisis and Need to Contact Someone

The standard advice for coping with a crisis is to call 911 or a crisis hotline. Both of these seem impossible if you can’t use your voice. Here are some options:

Text a Friend, Family Member, or Professional

Just as Aaron did in the story above, your problem might be best addressed by texting or otherwise messaging a person in your life who can help you or contacting the authorities through text or Facebook.

Some people don’t like to get the police involved in crisis situations, especially sensitive situations like potential suicide. If you are interested in other options besides contacting the police, you will want to read What to Do Instead of Calling the Police.

Use Technology Developed for Deaf People

One of the mandates of the ADA (Americans with Disabilities Act) was making the phone system accessible to Deaf and Hard of Hearing people. This access has primarily been provided through TTY and Relay calls.

TTY means teletypewriter. That is a piece of machinery that is rarely used today but the word has stuck around, just like you will hear older people talk about “taping” a show even though they are doing it digitally. Back in the late 1980s when I met my first Deaf friends, their TTY was a clunky, heavy machine that never left their dorm room. Relay calls are calls made using a special service that takes your TTY typing and speaks it out loud to a person on the phone, then types their answers back to you.

I used to have a friend who taught me that Autistic people are allowed to use TTY/Relay technology even if we aren't Deaf. The system is free to use. It's been six years since the friend said anything about the technology they were using, but they had a free account with NexTalk. They said it took some time to get a number and activate it, but once that was done, they could make and take outgoing and incoming TTY calls on their computer with no problem.

I note on the NexTalk site that they intend to provide Apple/Android access to NexTalk in the future although it is not currently available. Many smart phones have TTY services built into them now, however.

For example, Apple iPhones running iOS 10 or later have built-in TTY which you can turn on by going to settings > general > accessibility > tty. You can use 711  to access Relay services. To access TTY on other types of smart phones, Google your phone, read the manual, or consult with the store where you bought your phone.

If you’re buying a new cell phone and want to make sure you can use TTY/Relay on it, look for the TTY symbol:

[image description: a graphic depicting an old-fashioned 

telephone handset resting on a computer keyboard.]

Use a Text-to-Speech Device on a Regular Phone Line

A TTS or text-to-speech device is a form of Alternative and Augmented Communication (AAC) that synthesizes a voice and reads written text in that voice. Most people are familiar with physicist Stephen Hawking’s TTS voice. Another well-known synthesized voice is Apple’s Siri.

In the past, TTS was expensive and required carrying around a heavy machine. Cell phones and tablet devices have made TTS lightweight and much more affordable.

My friend Cal Montgomery was recently trapped in a Chicago train station and tried to use a TTS to get help. Metra Emergency Services hung up on him every time he called. This is one of the biggest drawbacks of having a “machine voice” to speak through. In person, someone can see that you are using a device to speak. While people won’t always be patient or observe proper etiquette, they tend to listen. But over the telephone, people get impatient and assume you are a computerized telemarketer or worse.

Cal’s story is helpful because he explains his step-by-step problem-solving process as he is going through it. He uses multiple methods to try to contact people who can help him. While his TTS doesn’t yield good results and flagging down trains doesn’t get useful results, he is also able to get someone to show up by using the police call box. He even brings the firefighters into the situation to help. Eventually someone figures out that the elevator was turned off.  Once the elevator got turned back on, he was able to leave the train station. The situation was a major fail on the part of Chicago Metra, but a great case study in communication problem solving.

I have two different AAC apps that are my favorites. On my iPad mini I use an app called Verbally that allows me to type words in regularly and pre-program frequently used phrases. On my cell phone I use Speak It! These are both Apple OS apps. If you are looking for an AAC app to use on your tablet or smartphone, Practical AAC has a great information resource.

Use the Text Crisis Line

There is a text-only crisis line for those of us who can’t or don’t want to seek help in a crisis using our voices. The way it works is to text “HOME” to 741-741. A real person will respond and help you with your crisis.

It can take five minutes or more for a person to get on the line with you, so if you have a crisis that you know requires a call to 911, you may want to try a different route first, like a TTY/Relay call to 911 or texting a person you know who can call 911 for you. The text crisis line might also be a useful place to find someone to call 911 for you, if that’s what you need in the moment.

If you’re anxious, depressed, suicidal, and so on, the text-only crisis line may be exactly what you need. It’s primary purpose is for managing painful emotions. It’s not a long-term solution and the people staffing the line are only trained to get you from a “hot” moment to a “cool” moment, but many times that’s exactly what a person needs.

How to Interact With Others During a Crisis

So far, I’ve covered ways to get hold of people who aren’t right there with you. Now let’s talk about some useful ways to interact with people who are on the scene and might be able to help you with your crisis.

Identifying Yourself as Autistic

Sometimes you need a quick and easy way to let someone know that you are Autistic. A medical ID card can be very useful. Unlike other options like registries, you can choose when to disclose or not by handing your ID card to someone, or keeping it to yourself.

There are many available ID cards to choose from. You can also design one yourself to meet your personal needs. ID cards can be on cardstock, like business cards, or they can be on plastic, like a credit card.

One way to use an autism ID card is to hand it along with your regular ID card when someone asks for your ID. This is especially useful if you are being questioned by a police officer and feel that knowledge of your autism will help the police officer make better decisions about the encounter.

The ID card I use was made by the Disability Independence Group. Their website includes a helpful video about how to use an autism ID card when interacting with the police. I highly recommend watching the video even if you choose a different card or no card at all. The video is geared mainly toward those with full speech. There is one person in the video with intermittent speech but she may have more speech ability than you do.

Still, she models showing her identification card which is something you could do without speaking, especially if you have the card already out so you don’t have to reach into a pocket to get it. If you frequently have problems with being stopped by police (as many of us do!) you might try putting an autism disclosure card in a privacy sleeve on a lanyard to make it easier to give it to a police officer without speaking while not appearing threatening the way you would if you suddenly reached into a pocket or bag without saying anything.

Some other helpful cards include Autistic Hoya’s Disclosure Cards, Autism ID cards sold by the city of Pittsburgh , or the ICE4Autism  phone app, which I also have installed on my iPad mini.

Communicating With Others

In addition to an AAC device, which is covered above in the section about using a text-to-speech device to communicate on the telephone, some options for communicating with people in person during a crisis include:

Using Sign Language

If you are able to learn sign language and this form of communication works for you during moments of stress, you may want to devote some time to it. Most people do not understand sign language itself, but most people do understand what it is. While sign language is less universal than written text or words spoken by a synthesized voice, it has the advantage of being a method of communication most people can relate to and are willing to try to work with, or find you someone who can work with it.

I am not fluent in sign language, but I’ve learned enough of it to be understood during a crisis situation if I have no other way to communicate with people. I once had a problem with a hospital emergency room claiming they couldn’t provide an interpreter at 3:00 AM, but another patient in the emergency room immediately took them to task, claiming to be a lawyer. It was amazing how quickly the hospital woke someone up who could help me be understood.

Using a White Board

I’ve only used a white board when communicating with police officers who came to my home during a situation, but it worked well enough to protect me from harm. Using a notebook or other paper would also work, but I have dysgraphia and have found that writing on a white board is much easier for me than writing on paper.

My white board is small enough that I have brought it along with me on my travels because it slides easily into a bag. It might not be an optimal solution for you or it might be perfect for your needs. Either way, if you are able to use a white board you might want to keep one around just in case. I have found that it’s a good idea to keep multiple means of communication available to me because I never know when I might need something different. If the battery on my phone is dead, a white board could save me.

Using the Emergency Chat App

Jeroen De Busser designed an Emergency Chat app for Apple and Android. He is Autistic and designed what he knew would help him in situations where he was unable to use his voice or ears to communicate with others.

When you open the app, you see a default screen that explains your situation. This screen can be customized and here’s what I’ve written for mine:

[image description: a screen that says: I need help.
I gave you my phone because I can’t use or process speech right now,
but I am still capable of text communication.
My hearing and tactile senses are extremely sensitive in this state
so please refrain from touching me. Please keep calm, and proceed
to the next screen that has a simple chat client through
which we can communicate. Continue.]

You might notice that I used very formal language in my description. I did that on purpose because I’ve found that people often treat me poorly when I’m unable to speak. I intentionally used my best language in the description to help set the tone for any typed conversation that follows. You may consider doing the same: use your words, but use your best words. Think of it like putting on a suit or nice dress in order to put forth the best impression you can.

People who don’t know us can sometimes treat us as lesser when they realize we can’t speak. Trying to make our best impression possible can help keep us alive and free and help us get our needs met. I wish this weren’t the case, but it is, so we need to do whatever we can to protect ourselves until the world learns that not being able to make speech does not  mean anything about who we are as human beings.

When the person you’ve handed your phone or tablet to clicks on “Continue” a chat screen will come up. You and the person you’re communicating with can type back and forth to one another just as if you were sending texts to each other.

[image description: a chat screen with a back and forth conversation that reads:
This is what the app looks like in use. You can hand the phone back and forth
to type messages. And it’s just like a text chat, but in person.]

How to Remember These Options in a Crisis

I have a few things set up on my phone to help me remember that some of these options are available to me.

Make a Folder on Your Phone or Tablet

One thing I’ve done is set up a folder on my phone, named “crisis help” with a link to the webpage for the crisis text and my AAC and in-person text app. Putting all my crisis tools together in a single folder makes it easier for me to access them when I need them most.

Add The Crisis Text Line to Your Contact List

Another thing I’ve done is to add the crisis text line to my phone contact list. I added it by setting the first name as “Crisis Text Line” and the last name as “AAAAA Text HOME to Start”. That way it shows up at the very top of my contact list so it’s easy to find and “staring right at me” when I open my contact list to decide who I should text. If I’m not in crisis, I can look through my contacts and find someone else. If I am in crisis, I’m grateful to find help right there on top.

[image description: Maxfield Sparrow’s contact list, with the
Crisis Text Line at the very top of the list. The rest of Max’s
contacts have been blacked out to protect their privacy.]

Make a Reminder Image on Your Lock Screen or Background

Another way to remind yourself what to do in a crisis is to create a lock screen and/or background screen for your phone or tablet with words to remind yourself what options are available so that you don’t have to count on being able to remember what you can do when things get intense.

You can create an image or text file with step-by-step instructions or a checklist to help you decide what to do and use your lock/background screen to remind you to look at your list.

Make a Personal Checklist to Troubleshoot Problems

If you often find yourself distressed but unsure why, you might want to make a personal checklist when you are feeling good.  The list can help you work through what might be bothering you. Start with the most serious issues you might be facing.

For example, a personal checklist for me would start with: Have you checked your blood sugar? I have diabetes and a very low or very high blood sugar affects me emotionally and cognitively so it might be the root of my distress. Blood sugar disruption could kill me so it belongs on the top of my personal checklist, above questions like: Are you too hot or too cold? Or: Did you drink enough water today? Both temperature and dehydration are things I struggle to maintain and both can cause me to be very irritable or stressed out, but since blood sugar variations can kill me more quickly than overheating or dehydration, it goes higher on my personal checklist.

Only you can know what should be on your checklist, but the interactive self-care guide can help you decide what sort of things you want to put on your list and what order you want your checklist to have.

Conclusion

Despite how long this article is, it’s really just a basic overview of ways to find help, ask for help, and help yourself. Self advocacy and self care are important skills that everyone should continue to work to develop throughout the course of their entire life. We can never have too much skill when it comes to taking care of ourselves and reaching out to the people who can help us take care of ourselves.

Be well, stay safe, and take care of yourself. The world needs you, the people in your life need you, but most importantly of all, you need you. I hope these tips have been helpful to you and may you always find your calm in the midst of all of life’s storms.

Read More

Book Review: There’s More Than One Way Home

Maxfield Sparrow
unstrangemind.com

A mother’s worst nightmare: That’s what Anna thinks she might be facing at the beginning of Donna Levin’s spellbinding novel There's More Than One Way Home. It’s 2004 and Anna has accompanied her Autistic son, Jack, as a class chaperone on a field trip to Minotaur Island near San Francisco. When four children—Jack among them—turn up missing, Anna fears the worst.

Everyone pulls together to comb the island, and the boys are found.  One is dead after all, but to Anna’s guilty relief, it is not her Jack. Thus begins a mother’s second worst nightmare, as Jack is accused of murder. The story unfolds from there: Jack’s loving but authoritarian father’s hands are tied with respect to the case, since he is the district attorney and thus has a conflict of interest. Free-spirited Doctor Valentine helps keep Jack out of the crushing institutionalization of the combined penal and psychiatric systems, while flirting with Anna behind her husband’s back. And Anna is caught in the middle of everything, facing choices not unlike those of her namesake in Tolstoy’s classic novel, Anna Karenina.

Can Jack be saved from a life of imprisonment? Can Jack’s father, Alex, get re-elected to his position in the midst of such a public scandal? Will Anna follow her head and stay with Alex, or follow her heart with sensitive and seductive Dr. Valentine—Val, as he asks everyone to call him? All these questions are explored in the novel’s pages, and primarily the story focuses on Anna.

There were things I loved about this novel and things that made me rather uncomfortable about it. Before I elaborate, I should note that I don’t think I am the book's target reader. This was a novel clearly written about, and for, non-autistic mothers of Autistic children. As an Autistic adult who has not raised a child, my view of the story might be slightly different from that of the intended reader. Do I think the mother of an Autistic child will enjoy this novel? Oh, definitely yes. But I hope potential readers will find value in my insights about the novel as well.

First off, I did greatly enjoy the novel. It is well-written and pulled me right into the story straight away. I was eager to find out what would happen next at every moment, and all the characters were well-developed, with blessings and flaws, quirks and agendas. I felt like I was reading about real people, not characters ... although this leads me to my first complaint about the story: Jack himself was not a well-developed character.

Jack felt more like a plot point to me than a person. I knew some of his preferences and fears, and his speech pattern made it always clear when he was speaking. But he never felt like a full person to me like Anna, Alex, or Val did. It wasn’t just because Jack wasn’t the protagonist, because I felt more full-roundedness from Alex, whose presence in the story was much like his presence in his home: brief appearances here and there, but mostly disengaged from the action and the emotions of the novel. Yet even his character felt more real to me than Jack’s. Although the novel was about Anna and her character was very well developed, I was disappointed to feel like Jack was more of a plot device.

Despite Jack’s less-articulated character, Anna very clearly loves Jack, and I loved that about the novel. Her love is depicted as complex and questioning, but very strong. Opening on a crisis gives us a chance to see Anna regretting being irritated with some of Jack’s autistic traits, and resolving to be more accepting and more appreciative. Throughout the novel, Anna moves back and forth between being bothered by Jack’s autism and being accepting of it. While some might expect me to dislike that, since I write so much about autism acceptance, actually I was delighted by the depiction of Anna’s struggles with autism acceptance because it made her feel so much more real to me.

Anna has a great voice as story narrator. She is extremely well-educated and regularly makes references to literature and pop culture. Not only is she smart, but she’s snarky, making her perspective on events lively and entertaining. There was one point, however, where I felt like she crossed a line with her zesty sense of humor, leaving me feeling cold and uncomfortable.  “I hadn’t left him with a sitter for an evening the first six months,” Anna tells us readers, “but by then I was sympathizing with Andrea Yates.”

I understand that Anna’s character is trying to be darkly humorous with that comment, but it went too far into darkness for my tastes. Joking about murdering one’s children is already in very poor taste. But when the child in question is also autistic? That goes far beyond the pale. An average of 80 disabled people per year, many of them autistic, are killed by parents of caregivers. So often, society’s response is to shrug and say how understandable it is that a parent would want to be rid of such a burden. Filicide is an ongoing and very painful issue in autism communities and even a work of fiction has certain political obligations to the demographic it portrays. While I loved Levin’s book overall, this one sentence weighed heavily on my heart when I read it. I can forgive Jack being less developed than other characters, but it’s not so easy for me to shrug off Anna’s identification with a woman who murdered her five children.

Other than that gruesome note, I do recommend There’s More Than One Way Home to readers. Anna felt like a clever, chatty friend, and I genuinely cared about her decisions and the repercussions of those choices. Jack was lively and lovable. Levin’s villains had humanity, and her heroes had feet of clay. Overall, I feel she rose to the challenge of writing a story with an autistic major character and her storytelling skills had me turning page after page, late into the night. Readers, particularly those with autistic children of their own, will find a friend in Anna Kagen—someone who’s been down the same path, with her wit and humor intact.

Read More