Books on Autism

Over the last year, and especially in the last few months, I've been trying to learn as much as I can about myself and how I can relate to the world as an autistic person. At this point, I've only read books written by people who are autistic, as I've much more interested in people's personal experiences than in someone's study of it. When I exhaust these, I will branch out to others' perspectives.

Here are a few books that I have found helpful so far:

Asperger Syndrome and Anxiety: A Guide to Successful Stress Management

This book was the first book I read on the autism spectrum. In fact, I discovered I was autistic in my journey to figure out why I was anxious—about everything. Turns out anxiety is just part of the experience of being autistic and this book had a number of helpful tips on how to manage it. It's written by someone on the spectrum who is also a therapist, bringing together both expert advice and personal experience.

Asperger's on the Job: Must-Have Advice for People with Asperger's or High Functioning Autism and their Employers, Educators, and Advocates

I picked this book up after experiencing tension at work. Within the first couple pages, I felt healing take place in my heart—there's something beautiful knowing you're not crazy and you're not alone. Honestly, people with autism have a lot to offer the work place: our intelligence is more "fluid", we think outside the box, we are creative problem-solvers, hard workers, and honest to the bone—like super, super honest. But sometimes people don't understand what we mean, and we usually fail to follow common social cues, this plus sensory stresses and anxiety from being under scrutiny can cause problems in the work place. This book lays it all out and is a great resource for anyone on the spectrum or anyone who wants the benefits of having someone on their staff who is.

The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man's Quest to Be a Better Husband

I'm still in the middle of reading this one, but the first chapter was enough to play a huge role in saving our marriage. As many of you know. Allyssa and I nearly got divorced. This story changed because Allyssa discovered, came to understand, and accept me as someone who is autistic. I'm pretty good at masking, but that can't last all day. Allyssa was stuck with the real me, and that was, at times, less than she signed up for. It wasn't until she realized that my actions and comments were a product of my neurology and not a character flaw, that our marriage shifted for the better. She will tell anyone, "If you want to understand Joe, go read about autism—even just a good paragraph description will make all the difference!" I got super luck with Allyssa—her willingness to understand and trust who I am has saved our marriage. Now we're doing great! This book is a good introduction to how autism can impact a marriage.

On the Spectrum: Autism, Faith, and the Gifts of Neurodiversity

I am in the process of finishing this book. It's written by a christian who is also a creative writer—so anyone who knows me, knows why I connected with it. In the book, he tells his story, but also reflects on how autism fuels his faith and creative expression. There are a couple chapters in here that I found especially helpful as build my own theology for living with autism, both as a pastor and a creative.

It Turns Out I’m Autistic

Two months ago, Allyssa and I sat down and watched Hannah Gadsby’s new special on Netflix, Douglas. Much like her Nannette special, she mixed vulnerability and comedic observation so few others can. In Douglas, instead of talking about her sexuality, she delved into her experience living on the autism spectrum. 

I remember thinking, this sounds a lot like me.

That night I googled adult autism and aspergers (which is a term I don’t like, mostly because it’s the name of a Nazi who is responsible for the death of countless children! Look it up and please do not use it around me). I found a few simple assessments, including a list of bullet points. I was laying in bed and Allyssa was trying to go to sleep when I tapped her shoulder. 

I showed her the article and let her read the bullet points. 

“At least half of these points sound like me.”

She nodded and passed the phone back to me. I got distracted researching some more, and she fell asleep. 

That morning, over breakfast, I brought it up again. 

“So that list of adult autism... I think I might be autistic.”

She took a bite of cereal and looked at me. 

“What do you think?”

She put her spoon down. “When you showed me that list last night and said half of the points were true for you? Well, honestly, all but one of them seemed to describe you.”

“Really?” I got excited. This would be a big deal! A whole new way of looking at myself and the world. 

“In fact,” Allyssa added, “Last year, when I was seeing a counselor and I was talking about our relationship, she asked me, ‘Do you think Joe is on the autism spectrum?’”

“You’ve got to be kidding me? She asked that?”

After that breakfast conversation, I began reading and talking with friends. I shared the insights with my counselor, and she affirmed what I was learning about myself. I shared similar insights with my doctor, and he too affirmed the conclusions we were making. 

It turns out that I am on the autism spectrum. 

Realizing this has brought greater clarity to my life than any other realization I’ve had. Allyssa said countless times that first month, “Our marriage makes sense now. My life makes sense now.”

We used to argue about how we spent time together. We spent months with a counselor dealing with the fact that my favorite activity with Allyssa was when we got to do our own things in the same room. She couldn’t understand why I would enjoy doing something by myself without her. Now we have a word for that. They call it “parallel play”—a term used for children, in general, but a good description of my perfect date. 

Countless times I would hurt Allyssa by saying something mean—except I didn’t know it was mean. This wasn’t unique to Allyssa, as I’ve ruined a lot of relationships by saying and doing (or not doing) things that I did not know were hurtful. 

Most of my social anxiety comes from the fears that I will say or do the wrong thing, constantly wondering who might get upset, without warning, at something I did not know I was doing. And there’s plenty of evidence for this—for it has happened countless times. 

Everyone has always told me I think outside the box, but now we know why. 

Allyssa gets annoyed I fixate on things and devote all free time to them… except it turns out it’s not a character defect, it’s just the way my brain works. 

I don’t like change that I’m not leading. 

I get overwhelmed with loud noises and crowds and too many voices. Dinner parties are one of my circles of hell. 

Most of my struggles with mental health and anxiety seem to point back to my experience with autism.

I no longer beat myself up for finding human interactions exhausting. 

I no longer beat myself up for over sharing.

I am me, and I can’t be anyone else. 

I know God’s grace is big enough for me (and for you), and I believe we are all created to contribute something positive to the world. 

I am proud of who I am and who I am becoming and see my neurodivergence as an asset I hope to continue to offer to the world. 

But I know it’s not all good. If I have ever said or done something that bothered you, hurt your feelings, or failed to show you love, I’m sorry. There’s a good chance I wasn’t fully aware of what I was doing and I deeply regret any pain I caused you. I am not making excuses for unacceptable behavior, but I hope to increase understanding. 

 There’s a lot more to this than I can spell out in a single blog. And there’s a lot more to unpack and learn than has happened in the last two months. Maybe over time I will share more. Until then, I thank everyone who has given me a chance, as a friend, family member, coworker, church member, and colleague. I love you in ways I find hard to express. 

I am lucky to have you in my life and grateful to have you on this journey with me. 

Let's Talk About Mental Health

I’m seeing more and more people talk about mental health. With friends struggling with anxiety and depression, a couple colleagues committing suicide, and marriages falling apart around me… we need to talk about mental health.And I’m seeing people talk about it online and in articles… but I feel most of these shorter posts end with: don’t be ashamed to get help.Ok. Fine. I’m ready to get help.That’s where I found myself over a year ago.I was ready. I was over the stigma. I talked about it’s value. I encouraged others to see a counselor. I mentioned it in sermons.I remember the moment when I finally said, “I’m doing it!”Based on how it’s talked about, I figured once I reached that point and I took the leap towards seeking help, things would just fall into place.I couldn’t have been more wrong.That’s when things got really hard.For two reasons: First, once you start working on stuff, well, life gets harder for a while, not better. But second, finding the right kind of help, figuring out how to pay for it, figuring out insurance, and learning to navigate it all… well, that’s a whole other world of stress to add to someone already overwhelmed.That’s the struggle I haven’t heard people talk about as much. And so if you’re ready to start this journey, and you want to know some of the struggles that lay ahead… well, read on.(If you’d prefer not to know, because of fear you might not keep moving forward… well, stop reading. Seriously.)So, from my experience, here are the five barriers to getting help and how I tried to overcome them.

1. It’s expensive.

I remember when Allyssa and I first went to see a counselor. We both did separate intake interviews, each costing around $100. Then they informed us we would need to both see a counselor, no less than once a week, for the foreseeable future, each costing $100 each. That would be a $200/per week increase in our personal budget. Friends, that wasn’t going to happen. Canceling Netflix and avoiding coffee shops wasn't going to make up the difference.We explained that to them, and they sent us to the front desk to find more affordable options. I remember joking, in the most depressing way possible, with the receptionist: “It’s kind of funny. We came to get marriage counseling in part because of our financial problems, but of course, because of that, we can’t afford the counseling.” It wasn’t funny at all. But the struggle is real.There is no easy solution for this. For us, it took about a year to change our financial situation, by reworking our personal and church budget to have the money to get the counseling we need. For some, putting counseling off for a year isn’t an option. I don’t have much advice, other than, it’s hard, and if you’re struggling, I see you. And I personally would love to help you figure out how you can afford it, even if you just need someone to chat with about it.

2. Insurance is annoying. Even good insurance.

Sure, we have insurance. I hear it’s not the worst insurance. In fact, they even cover 6 free counseling sessions! The problem is navigating all of that is extremely difficult. I recently got connected with a therapist I actually enjoy, and reached out to our provider to see if it was covered in the plan. Two weeks later, it still wasn’t resolved, and I’ve already seen the person twice, which means I’ll be paying for that out of pocket. (Not to mention, it will likely not end up being covered at all). Insurance is hard. Money is hard. And people who are seeking help, like myself, might already struggle with anxiety… so the last thing we need is more things to be stressed about.There’s no easy way around this. The best advice is to set aside time in your schedule to work on this. Making phone calls, sending emails, and following up with them takes energy and time, and if you’re in the midst of a struggle, this will feel like the feather that breaks the camel’s back. So please be resilient, and keep at it. And, reach out to me or someone you trust.Having a friend, who’s navigated the system, talk through it with you, is one way to calm some of that stress. It might not fix the issue, but it can help bring clarity.

3. Finding the right counselor is hard.

A counselor/therapist isn’t like any other doctor. When it comes to other medical professionals, I can put up with just about anyone, as long as they do their job well. Not the case with a counselor. If I’m going to open up, I need someone I’m comfortable with. There’s no formula to determine if someone will be comfortable, which means the only way to find out, is to try. So not only do you have to navigate how you’re going to pay for it, and whether insurance covers it, but the first couple counselors you see might not even be the right fit… (which will feel like wasted money, it’s not). All of this only complicates your personal budget issues and the insurance process. This is yet another barrier to getting the help we need.The best advice I can give us this: give yourself time. It might not feel like you have time, and if you’re in an emergency situation, stay with someone even if they aren’t the right fit. Most counselors are going to be good enough to get you to a more stable place. Once you’re there, you can start shopping around. But you can’t put this off forever. Finding the right fit can make all the difference. Don’t ever feel obligated to keep a counselor just because you’ve started with them. this is about you getting healthy, and you need to be assertive. Which leads to number four:

4. It’s a terrible time to have to be assertive.

If you’re having a hard time, and you’re like me, it’s the last season in your life where you feel empowered to be assertive. You’re seeking help; which means if we’re honest, we just want someone to fix our problems and tell us what to do. This might be what we want, but it’s not what we need. We need to be assertive.I didn’t want the gender of my counselor to matter. As I strive to be more open-minded and respectful of all people in all kinds of professional positions, I wanted to be able to get help from whoever. So when I started this journey, I didn’t think it was appropriate to ask for a male counselor. The truth is, given what I was working through and where I’m at in my own journey, gender mattered to me. Things had to get pretty desperate for me before I finally asked someone, “Do you know of any male counselors I could see?” I was surprised how ok they were with that question. I was immediately recommended to someone, and it made all the difference. I had to learn that it takes being assertive.The barrier, of course is obvious: if you’re in the throes of struggle, and feeling down and out, being assertive might not feel like an option.Maybe you don’t have the strength to be assertive. If so, start where you are. See anyone who will see you, but as you grow, step out and work towards finding the right person who can help you get to the next level. In other words, it’s going to take time. Which leads to number five.

5. We’re all too busy

No one has time in their day to see a counselor. We’re busy. I’m busy. You’re busy. The time it takes to search for a counselor, figure out insurance, rework your budget, go to a counselor, find a different one because that one wasn’t the right fit, and then go weekly, or bi-weekly… no one has time for that. This is a real barrier. My journey of finding a counseling kept getting pushed off, for what turned into years.But this isn’t the worst part of being too busy. The truth is, not only are we too busy, but everyone else is too busy too. There’s nothing worse than knowing you need community, and unable to find it because everyone is just as overwhelmed as you. If you’re struggling, and you’re really struggling, you will at some point feel like your friends, peers, and supportive network don’t have time for you. And the bigger the problems, the more you will feel that way. This sense of rejection (real or imagined) can be a real barrier to getting any kind of help.So for all those who hoped I would be more accessible in times of need, I’m sorry. I really do want to change how I schedule my life so that I have the margin to be present with you. I do, and I’m trying. It’s hard. I’m working on it. I hope to get to it.. once a get few other things done… ;)Regardless of the challenges, getting help is worth it. It’s worth the effort. It’s worth the time. And it’s worth trying over and over again until you find it. If you feel rejected right now, please don’t give up. try again. And reach out to a professional; there are plenty of counselors hoping to full their schedules each week. It does take a lot of time, but it’s worth it. And we need to change how we live, so we have the margin to be there for people.We need to do more than just overcome the stigma of mental health. We need to talk more openly about the challenges, support each other in the process of seeking help, and change our health care system to make this kind of stuff more accessible to everyone.What has your journey been?What have been some the challenges you didn’t expect when you started the process?What advice do you have for someone starting out?