My daughter is considered low support needs. She communicates fluently verbally and has no intellectual barriers to education. If you met her at your local playground, you probably wouldn’t even consider that she may be neurodivergent.
In fact, you would likely comment on how friendly she was and what a big vocabulary she had. You might even call her a “tiny adult.” You wouldn’t see the anxiety behind her carefully-chosen words or the need to please fueling her extroverted interaction.
You also wouldn’t see her retreat to her bedroom and huddle under the covers upon arriving home. She tucks the covers in snugly around her and watches a YouTube video she has seen more times than I can count, with the lights off. It helps her to regulate and de-stress.
You don’t see her the morning after a day that was just too full. On those mornings, she seems like a different child.
She struggles to find clothes she can tolerate wearing. Her previously-impressive vocabulary reduced to the phrase, “It’s just wrong,” or ” It doesn’t feel right.” You don’t see her when there has been an unexpected change of plans that she doesn’t have the mental space to process. You don’t see her dig her heels in and refuse to let a doctor touch her in order to complete a needed exam. You don’t see her give up on an art project and completely break down because she made one mistake.
She has great abilities and equally significant difficulties. As an autistic adult, I do as well. Raising her is an honor and a joy. It is also incredibly difficult. I have wanted to be a mother for as long as I can remember. I am a natural caregiver, so I arrogantly assumed that mothering would easily integrate into my life. I never questioned that I would be good at it or that it would come with ease.
I was wrong.
My daughter is worth every sleepless night and stress-filled day we have ever had. She is golden and priceless and wonderful beyond words. That does not change how challenging our lives are. I will not lie to myself, or to anyone else, by placing a rose colored lens over the truth.
This isn’t a piece that sings of how the strengths of autism are more-than-worth the struggles– not because that sentiment isn’t true. It is true, but it isn’t helpful.
If you are the parent of an autistic child, you need more than validation and an outstretched branch of hope. You need real, practical advice. I aim to provide you with a bit of what was not given to me.
Choose your battles wisely.
This is an old trope, but a worthy one in this case. If you want a peaceful life for both yourself and your child, I implore you to consider what really matters.
My daughter eats exactly three vegetables without significant upset. She barely touches meat. This isn’t because she desires to be picky and difficult. Textures are a big concern for her. Between sensory struggles and several food intolerances, her menu is very limited.
I used to agonize over it. I let the opinion of others make me feel like a bad mom who just wasn’t capable of making my kid listen or inspiring her to try new things. But, pushing never helped either of us. Instead, it turned eating into a negative experience and made things worse.
Now, I allow her to eat repetitively. She eats a lot of eggs and she loves peanut butter, both of which cover protein just fine. If she eats scrambled eggs and apple slices with peanut three times in one week, so be it. Her nutritional needs are met, and that is what is important.
I still offer new foods, of course. I just don’t make a big deal of it. She has made more progress with adding new foods to her diet this way than she ever did before I changed my approach. Now that she doesn’t feel forced or pressured and knows she can opt out without disappointing me or being stuck in a power struggle, she is more open to change.
I pick my battles with food, clothes, and daily demands. I compromise, a lot. It is of great importance that she eats decent food, wears weather-appropriate clothing, and makes it to school and appointments. The details of how all that happens, though? They aren’t all that significant. Which leads me to…
When possible, avoid direct demands.
Autistic individuals are often highly triggered by demands. It isn’t that we don’t want to be helpful or cooperative. It’s that we have limited executive functioning and emotional energy. When we feel something absolutely has to be done, we become anxious and feel the need to avoid. This is especially true for autistic children, because they are still learning to regulate themselves.
It is impossible to avoid demands entirely, of course. Tasks have to be completed and the adults need to be in charge; however, it is possible accomplish goals without living in a constant power struggle.
My daughter loves to feel helpful and make others happy. Because of this, I often frame requests in a way that allows her to feel of service.
“It would be a big help if you could put your bag and shoes in your room.”
“I would love for you to help set the table for dinner.”
“It would make me really happy if you could go ahead and take your shower.”
I get a much more positive response this way than with consistently ordering her to do things. Of course, sometimes I have to be direct. When that happens, I lead with “I need you to” and end with “please.” If a demand must be extended, being direct (while still being kind) establishes that the issue cannot be compromised on.
Celebrate small victories and expect slow change.
There will be things your child struggles with that come easily to most people. Maybe they don’t have the fine motor skills to tie their shoelaces. Maybe making friends is really hard because they communicate in non traditional ways. Maybe they can’t sign up for the dance class their friends attend because they just can’t handle the feel of the leotard required to be worn. That’s okay.
Rejoice over alternative communication styles. Sing over new foods. Have a dance party in the living room in honor of successful outings.
Don’t put yourself or your child on an arbitrary, imaginary timeline. Instead, try to rest in the knowledge that there is no award for “finishing first.” It is beneficial for everyone involved to attempt to relax and enjoy each moment exactly as it is. Your efforts and lives are worthy of celebration.
Raising neurodivergent children is difficult, and it’s okay to admit that. Acknowledging the difficulty of the task does not make you a bad parent. Admitting you need help or support isn’t weakness, and speaking your truth can be an empowering experience.
The best place to go for finding that support is the adult autistic community. A supportive group is NeuroClastic has an article for that on Facebook. You can also use the #AskingAutistics hashtag on Twitter.
Admitting you are struggling–and getting the support you need– is the first step towards making life easier, for both yourself and your child.
Brittney Neal is an Early Childhood Education & Development professional, as well as a gigging local musician. She lives with her husband and daughter in Lynchburg, Va. She is a contributing writer for Neuroclastic, a website that provides information about the autism spectrum from autistic people.