our autism journey: 8 lessons

Here are 8 hard fought lessons from our 2nd year in this journey. If you have a child with autism or love someone with autism, I hope you find this helpful.

1. You have more power than you realize when it comes to advocating for your child. If something feels wrong, it probably is. If you’re not sure talk with a few trusted, objective people.
2. Be reflective. It’s very tempting to numb out and just survive (and it’s probably essential you do sometimes), but don’t stay there. Take some time to reflect on prevention, or other things to try. Enlist a professional, if needed.
3. There is a lot of divide in the autism community. You have to decide for yourself what you believe, but be patient with yourself and others while it’s being figured out. Keep reading. Diversify your reading. Read stuff written by autistics.

Side note– Here’s what I’m learning about the different ideologies: There are many autistics who believe Autism Speaks is a harmful, exploitative community. Many feel wounded and exploited by parents who make their child’s autism about them. The puzzle piece is offensive to them. check out this article to learn more about the puzzle piece. They are sick of people talking about them, without them. Movies, shows, and nonprofits about autism should include their voices. There’s the neurodiversity movement: love all the brains! Autism is a gift! Autism is our identity and we are not deficient. We are not missing a puzzle piece. We can’t be cured. Autism is who we are and we are not less, they say! I agree with this mentality. It feels positive, affirming, and hugely helpful in garnering acceptance from others and for themselves.

However, I also see and respect the point others make about the harm that the neurodiversity movement can cause. This ideology is hurtful to those that don’t resemble the “autistic genius” stereotype. What about those for whom autism is extremely debilitating and life threatening (higher rates of suicide, self-harm, eloping, drowning)? Is it offensive to call autism a gift? This article discuss more about the neurodiversity movement and the criticism of it: read here

I also read this interesting and heartbreaking piece on the misdiagnosis of autism that was actually a medical condition: here

I believe sometimes autism is misdiagnosed and parents are told to just accept it. Obviously that is completely unacceptable. I’m not sure how often the misdiagnosis happens, but I want to believe that it is absolutely the exception. It is basic good practice to first rule out medical causes before making any kind of other diagnosis. If you believe your child has been misdiagnosed, kick down doors until it’s right. I worry about the harm that this can create as far as blaming environmental factors (mothers) and seeing autism as an epidemic. The immunization argument worries me because I’ve not read any research that supports that it causes autism. This fear-filled ideology could be life threatening.

Bottom line: Stay curious. If someone believes differently than you, seek to understand from their perspective. And offer the most generous explanation you can for why they do or think differently than you. We are all just trying to figure this out. I don’t think there’s a one size fits all when it comes to our fundamental believes about autism. Is it a gift or a disorder? I think there’s truth to be found in all of it, and autism is so different for each person. Respect the unique journey in others and yourself. I too, will be a perpetual student and continue learning and shaping my beliefs about this as time goes on.

4. You MUST take care of yourself. It is not selfish to go on dates with your spouse, plan outings with your friends, and set aside time to be alone even if you have to leave the house. In fact, it’s essential. Journal, spend time with Jesus if you are a Christian. Do not stuff your feelings and make sure you’re processing them with someone. When I start yelling back, or am overcome with despair, I know I’m overdue for some time alone with my Bible, with Josh, or with a girlfriend. You may even need some counseling or medication at some point. That is ok! It’s vital that you are healthy.
5. You will grieve in waves. I still get struck by waves of grief when I see a child Caleb’s age doing something that Caleb can’t yet or when I spend another night feeling bruised, emotionally battered, and exhausted that this is our reality. You will not always like your child, but that doesn’t mean you love them any less. Be honest with someone about that, and make sure they know you’re just saying it out loud…not expecting them to fix it for you. It’s amazing how much letting it out will help those feelings pass.
6. Cherish every life-giving moment. I keep a journal of all the funny or sweet moments with my boys and will go back and read it sometimes when I need a boost. I spend extra time thinking about them. For example, the other day I asked Caleb after Field Day what his favorite part was. Without missing a beat, he said, “seeing you!” Swoon. I hold onto these memories.
7. There are days you’ll fear that everything you’re doing and have done is not working. That it’s not helping your child emotionally regulate, ask for help, etc. There are days I picture a teenage Caleb grabbing a knife during a meltdown. Days when I read about the high suicide rates in autistics and the shorter life expectancy and freak out. Do not stay there and do not give into fear! We have to keep doing the next right thing, we cannot give up on our kids. I will not project that future onto him. I will fight for him. Sometimes it feels like you’re taking 3 steps forward, and 2 steps back, but do not give up! Keep note of the progress you’ve made over time and think long-term.
8. Last but not least, give yourself grace. You’re going to get this wrong sometimes. You have permission to be human, but don’t stop learning and growing. I didn’t ask for this, but I’m not going to stop doing everything I can to make life the best it can be for Caleb and our family.