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To the struggling parent of an Autistic child

Hey, hi, hello, my friend. Before I get to talking, I want you to know:

wherever you are in your parenting journey, I see you;
whatever challenges you are facing right now, you aren't alone. Even if it feels like it.

Parenting is hard. Having a child who is Autistic and likely has other conditions is different, more complex, and just harder [content warning on this link for pathologizing language] than typical parenting.

I want you to know that this doesn't mean that things can't or won't get easier and happier for your family. In fact, my whole goal in my work is to help others problem-solve and improve their experiences, their lives.

I know it feels like people either think your parenting experience no harder, it's so "scary" they don't want to be around your family, or my least favorite, there's no Autism only bad parenting. It is harder especially if you don't have a model of support for how to parent an Autistic child in a way that works best for them (spoiler: it's not the one focused on obedience and punishment).

If you're struggling, your child is probably struggling too. We are social beings who give and take each others' energies. Help and support for one of you is help and support for the other. Autistic kids can be highly attuned to their parents moods and feelings.

Your parenting experience probably isn't what you expected. Maybe there are challenges that are overwhelming and problems that feel unsolvable. Maybe none of your friends or family have a parenting experience like you do. Maybe even other parents of Autistic kids you know seem to have an easier time. Maybe you don't know where to turn for help. Sometimes the people who are supposed to help Autistic kids ask parents to fix problems in ways that don't work, are harmful, or assign blame to the parent and to the child. I know because I've been there.

I'm a parent of an Autistic child too. My daughter is 10, Autistic and non-speaking. You won't see me sharing her experiences or challenges on these pages, but that doesn't mean there haven't been any. Though she is non-speaking, she has a communication method. She's shared with me that she's a private person. I occasionally share some of her wisdom and humor but only with her expressed permission. By protecting her privacy, I lose some ability to explain what challenges I have faced. So, you'll have to trust me on this.

I can't guarantee to fix anything with a blog post, but I can share with you some research on what helps make things better and encourage you to seek those things out.

Parenting style

How you interact with your child is probably the most important thing you will do as their parent

It's helpful to know that parents are the drivers in family dynamics even in families with Autistic children or children with other disabilities. This means how we are doing and how we act dictates how the whole family is doing. This is especially true for mothers. That's a pretty powerful realization. It's why I decided to write a book about the importance of self-care and community care. More and more parents are implementing systems to support their children sometimes learned from other professionals. This means more time with our children, more involvement in their care, and even more stress as we try to manage multiple roles.

The way we approach parenting has a direct impact on how our children behave. There is a ton of research on parenting practices for typical children. One important fact is that physical punishments have a detrimental impact on all children. In fact, new research shows that a child's brain doesn't know the difference between spanking and maltreatment (abuse). To the brain, it's all abuse. For Autistic children, there appears to be a higher likelihood of experiencing trauma and a higher chance of developing Post-Traumatic Stress Disorder (PTSD). Autism is a neurodevelopmental condition meaning Autistic brains are slightly different than non-Autistic brains. As much as we do know through research, there is more we don't know about Autism, co-occurring conditions, and the brain. However, Autistic adults tend to be a good resource for pinpointing issues and best practices for parenting before the researchers arrive on scene.

>>Considering the risk of trauma and PTSD in the context of parenting means that a gentle approach is needed. Boundaries and expectations are necessary. Positive parenting interventions are shown to reduce behavior issues for Autistic children while authoritative ones increase behaviors. Positive parenting looks like meeting the needs of the child as a preemptive to approach. It includes building a close relationship built of mutual respect and communication. For children with difficulty in communication, this may be one way until there is a communication method. It includes encouragement, safety, reasonable boundaries, and being present--interacting or joining with your child in a way that's meaningful to them. <<

I highly recommend following Autistic adults on social media platforms and joining groups that include Autistic adults and Autistic parents. Meeting the needs of your child is easier when you understand them and the issues that impact them.

Seek meaningful support
Not all support is equal. Ask for what your child needs and what you need and make sure none of it is harmful

We weren't meant to parent the way we do today without much support, but getting support for yourself or your child isn't easy. To make matters worse, not all supports designed for Autistic children or families is a good fit.

Supports mean building a team for your child and for yourself. This is going to include people in a lot of circles of your lives to be there and lend their support and expertise. If you don't have enough people in your life, start asking for connections. Ask professionals who work with your child for referrals to organizations, groups, or agencies that might be able to offer people you can meet and recruit into your circle.

Supports for your child
When your child was diagnosed, you were probably offered some suggestions of therapy, which usually includes speech therapy, occupational therapy, and Applied Behavior Analysis (or ABA). Like any therapy, there are questions you should ask about the approach and the particular providers. You may face limitations if you live in a rural area, and you may experience waitlists in any area. I suggest doing some research on therapy approaches and how they may impact the Autistic child. You should have regular conversations with any therapists about their approach and how your child is doing. Be honest. Not all therapies are helpful or harmless and not all therapists are a good fit for your child. I've written another post on ABA here.

I had a speech therapist for my daughter ask me repeatedly to revisit my "no forcing" rule with my daughter. I did not change my mind and it wasn't long before I realized that even though I didn't have many other options for speech at that time, none was actually better than someone who didn't appreciate vital, trauma-informed boundaries.

Our experiences with other therapists were mixed, but to be honest, most weren't great. Most therapists don't seem to know how to engage an Autistic child in age-appropriate ways. Neither do most teachers or school aides. We have had providers we adored. But those were few.

Lean into your child's specialized interests. I briefly discussed them here on my TikTok account. These are sources of joy and a place for you and others to connect with your child make their interests a part of your life. If your child is a fan of science, take them to museums or events, subscribe to documentary sources, read them books on their interests or offer books that can read themselves. If your child is having serious problems like aggression or self-harm, seek mental health and parenting support for you and for them. These issues aren't just something providers so tell you to accept. Ask for help and keep asking. You may not be able to stop all of these issues with changes or therapy and meds, but you should expect them to get better.

Supports for you
You need breaks. You need people to be there for your child so you can have a break. Without going into a whole other blog, be extremely cautious about who you give access to your children. The rates of abuse are jaw-dropping.

Community-Care and Social Care
You need people and programs that are designed for you and your child. People provide companionship, child care, home assistance, and more. These can be family or friends or they can be paid. That's where social care can come in.

If your child meets eligibility criteria, there may be programs in your state and county that offer supports such as paid workers, Medicaid, or other services that can take something off of your plate. Having help makes space for you to take care of yourself.

Radical Self-Care
If you can't get the care you need, you can't be an effective parent. I don't like it either, but that's it. Radical self-care is the orientation of seeing self-care as non-negotiable. It's harder to do this when you have more parenting stress and different circumstances, I get it, but it will improve and maybe even lengthen your life. Self-care is anything that sustains you or helps you recover without taking any collateral. Basics such as rest and nutrition apply to everyone, but whatever brings you peace and joy should be incorporated.

Self-compassion is an orientation of being gentle with yourself. There's a theme in my world and my work and that is gentleness. Your position on yourself and TO yourself should be a bit forgiving and very kind. This is also how you should approach your child. Pretty soon, one starts to see that most of life is better when approached with kindness.

First thing: acceptance isn't resignation. It's not giving up. It's being present with reality in a non-judgemental way.

In psychology, acceptance is akin to mindfulness. Acceptance is understanding what is, facing it, processing our feelings about it, and deciding what, if anything, we are to do in response to it. Acceptance is about facing circumstances and facing our feelings.

In our parenting, acceptance means taking our whole child as they are, processing how we feel about a given issue, and deciding how we want to support them. This might mean providers, medications, changes to the environment, adapting to your child's needs, adopting new traditions, and abandoning old ones.

It also means accepting ourselves. Accepting ourselves and our children will always yield returns. Your acceptance of your child will be felt by them.

Tara Brach talks about acceptance extensively. She's a psychologist, speaker, and Buddhist. In a talk, she mentioned one of the most common sources of suffering is believing there's something wrong with us. When you accept yourself and your child, you give a gift to yourself and to them. When you accept your child, they are free to love themselves.

Presuming competence and finding joy in your child
Your child has hidden depths. Whether or not they speak or are articulate. Even if they seem like they aren't paying attention to most things. Even if they talk endlessly about Roblox. Even if they do things that seem to conflict with this. There are depths there that they can't share with you yet. Believing that impacts the way you interact with your child and how you allow others to interact with them as well. Presume is different from assume. An assumption is based upon information. A presumption is what you come with before you know anything. Approach your child as if they understand anything a child their age who isn't Autistic would understand. They are always listening to what happens around them. Even if it doesn't seem like it. THEN, when they ask you or show you they need to learn, teach them. Teach them using a Gestalt method, one in which you share the bigger picture and connections. If you have a non-speaking child, you can expect me to share more content about the differences between appearance and internal experience for non-speakers, so consider subscribing to this blog.

If you don't relate to your child, I invite you keep trying. When you take an interest in their play or their interests, that feels special for both of you. Finding joy with them is an irreplaceable bond.

Understanding yourself
Getting to know yourself and your needs is always important, but it's especially important to monitor your mental health for changes. Know when you're on your way to being burnout. But also, there's something else I want to make you aware of.

This part is important to me because I'm Autistic and ADHD too, and I didn't know I had either condition until my daughter was diagnosed 8 years ago. I knew I had struggles--I was diagnosed with depression and anxiety. I knew I was different. Having the knowledge that my differences, struggles, and gifts had a name and came with a community was life-altering.

We don't know how many parents like me are out there living a whole life undiagnosed and unidentified, but we do know that Autism and ADHD are heavily heritable conditions. Though there's a belief that some environmental exposures in pregnancy can lead to Autism, most cases are genetic.

That means there's at least enough of a chance that you and the other parent of your child should consider your history and possible traits. Some resources for examining traits can be found here. There's also a concept referred to as Broader Autism Phenotype, which is having traits in the symptom clusters of Autism without having an impairment that would garner a clinical diagnosis. This is sometimes referred to as sub-clinical Autism. These traits have been observed in parents and family members of Autistic children since Autism was first identified.

Fellow parent, this is a hard gig. I hope something here helps you today. I know you're doing your best. What we know about parenting, Autism, and parenting Autistic kids is always changing. But, let your love for your child lead you to positive parenting and better outcomes. Our kids are complex and sometimes, things aren't very fun. Always be their safe harbor. Lean on people in your life.

Be well,

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