Come As You Are is a Family Affair

My daughter, Audrey, is 24 years old and autistic. Our family has more than two decades of experience with autism acceptance and “coming as we are.” Here are 9 things that “come as you are” and Autism Acceptance Month bring to mind for me.


1. No one exemplifies “come as you are” like Audrey. She approaches every activity and experience in life as much as possible on her own terms. She dresses herself in familiar, comfortable clothes, even if they’re not weather-appropriate or are too threadbare for public consumption. For Audrey, the best treat at Starbucks is a paper cup filled with cold water (no ice) to go with her chocolate chip cookie. When she’s happy she makes big movements with her arms, and big sounds with her voice, with no thought to how other people will perceive her. She teaches me to see cool things I never would have discovered for myself, like how the mirrors at either end of the dairy shelves at the grocery store reflect our smiling faces into infinity when we lean in and look at them from just the right angle. And how little it matters that other shoppers might find this a strange thing to do.

3 women outdoors on a sunny day, wearing matching green hats

Audrey (right), mom Joy (center) and sister Margaux (left) posing for a group selfie in matching frog hats

2. “Come as you are” means the whole family. When my girls were little, I was a tired, single mom managing work, all the usual parenting stuff, and an autistic child who needed constant supervision during the day and slept very little at night. Just like Audrey needs people to accept and support her differences, our whole family needed support simply to have friends or join community activities. There were many times when even picking up a box of crackers or a bag of fruit for a potluck felt like too much. “Come as you are” meant being welcomed with open arms, even if we arrived with empty ones.


3. Sometimes we can’t all “come as we are” at the same time. Audrey has her needs, her sister has others, and I have my own. It’s hard when people in a family have different, competing needs. It’s even harder when one of those people is at the “higher support needs” end of the autism spectrum. Even with all our love for one another and the best of intentions, it’s a struggle to create the balance and space everyone should have to thrive.

4. Autism acceptance is what lets us “come as we are.” We choose to go places that welcome us, all our quirks and extra needs included. The neighborhood restaurant where everyone gives Audrey her favored high-five in greeting and no one cringes when she lets out her loudest happy whoops. The aquatic centers that accept my promise that she can swim safely in the deep end, even though she won’t do their safety test to prove it. The dear friends who invite us back again and again, no matter what Audrey’s oddball pursuit of the moment is – trying out all the showers with her clothes on, burrowing under the fitted sheets of every bed in their house.

Young woman in a red jacket and black pants, swinging high on a park swing

Audrey swinging high at a local park – one of her favorite activities

5. There aren’t enough places where Audrey and our family can truly “come as we are.” Even services supposedly designed to meet her needs as a disabled person are often not able to do so. The burden of fitting in is still very much placed on Audrey, which means her world is very small, her scope of experience sadly limited.

6. Making space for us all to “come as we are” is not just about acceptance, but about policies and budget decisions that create the resources autistic people need to thrive. The support agencies and delivery systems in our state are difficult to navigate and are failing to meet the needs of many of our families. Advocating for better funding and more robust services at the state and federal level is crucially important.

7. It is when Audrey is invited to truly “come as you are” that she blossoms and grows. I have seen her shut down and stop communicating for months at a time when she’s surrounded by people who don’t understand her or believe in her abilities – or she might fall back on behaviors like biting her own hands until they bleed to convey how she feels. But with supportive communication partners who expect her to succeed, she glows with excitement at each small step forward she achieves.  

8. “Come as you are” means authentic acceptance of how Audrey’s autism impacts her. It means helping her overcome the aspects of her autism that make life hard for her – finding sensory activities that help her body settle and expanding her language communication to reduce her frustrations. It means acknowledging her vulnerability and the level of support she needs from others to live her fullest life.

Young girl in a blue tee shirt holding two lego bricks

Audrey enjoying the patterns on her lego blocks

9. When families like mine are invited to “come as we are,” it enriches lives beyond ours. I wish everyone could spend an afternoon with Audrey and experience the creative ways she examines the world, her enthusiasm for simple pleasures, her silly sense of humor. I hope that as autism acceptance grows in our society, it brings with it that deeper commitment to generous values and the concrete policies and actions that will make it possible for all of us to truly come as we are.



Visit the Seattle Children’s Autism Center Patient and Family Resources page to find autism resources for your own family, and connect with advocacy organizations seeking to improve the lives of families and individuals with autism.

You can learn more about Seattle Children’s invitation to “come as you are” for Autism Acceptance Month on The Autism Blog or by following the Autism Center’s Facebook page.












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In the eighteen years that my daughter and I have lived with her autism, I’ve heard all kinds of advice from people about what she needs, how to help her and even, at times, how to “cure” her.

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Abuse in the Form of a Hamburger

My 19-year-old daughter is profoundly deaf and severely impacted by autism and developmental delay. She’s been in supported living for the past three years – a single home that whole time, with one housemate in the other bedroom, run by an agency licensed by the state for her care. This past summer we experienced one of those incidents that I live in fear of at most times – fear kept tamped down to levels that don’t interfere with my everyday life, but still always calling out “present” when I check to see if it’s maybe taken some time off for a bit.

I had her out on her favorite Sunday lunch outing, a fast-food spot where she eats “cheese grilled sandwich french fries” as she invariably types into her iPad TouchChat app. It was just the two of us that day, and she was in one of her best moods, wide grins and lots of interactive communication about her new swim lessons on Thursdays and tomorrow’s planned outing with her grandparents.

While we were sitting and waiting for our order, a young woman came out from behind the grill – I recalled her from the cash register at previous visits, and she obviously recognized the far more memorable us. We’d never spoken before, though, and she started by asking if I was “her mom,” pointing to my daughter. “She was here last week,” the young woman told me, “with another girl who was, you know, disabled like her, and two older women with them.” She added descriptions that were clearly of my daughter’s housemate and some staff members. “I wasn’t happy with how the girls were being treated,” she then said, and paused, uncomfortable I think with saying more than I might want to hear. “Could you tell me more?” I asked, through the haze already rising up in my brain, hot and choking.

Pushing, shoving, impatience, food gone uneaten and taken away from the girls. “And you know how sometimes she” – pointing to my beloved girl – “kind of shrieks and flaps her hands really fast?” she asked. In fact, she had started doing it now, in happy anticipation of our meal. “Well, one of the staff people hit her up the side of the head when she did that

Always, always, my first focus in any situation is on my daughter and what she needs in that moment. Even though what I needed was to Get. My. Hands. On. Those. #%$!&$, what she needed was to unwrap her soggy white bread grilled cheese sandwich and gleefully peel away the crusts to eat first. She needed to carefully fill a cup with as many french fries from our shared order that she could, and place it out of my reach for her later attention. And yes, she needed to whip her head back and forth, flap her hands and let out a few shrieks as the meal progressed, just to express her excitement.

By the time these immediate needs of hers had been met, I’d honed my response down to the phone calls I needed to make right then, to figure out the next 24 hours and how to keep my daughter safe. This process was complicated by the chronic management upheaval at her home – there was currently no house manager in place, and the new “program director” (who oversees two or three houses run by the same agency) was literally starting in this position the next day, Monday. I had only met her and been given her phone number the week before.

The bare bones story of the weeks that followed include these scenes: my daughter “sleeping” (ha!) at my home Sunday night, because (I was told) there was insufficient proof to remove the staff in question from her home. Me waiting at the police station to file a report on Monday morning, and explaining to the officer in reply to his question that no, there was no possible scenario where physical restraint or coercion would be appropriate in caring for my daughter, even if she is developmentally disabled. It being safe for her to return home when the staff in question were finally suspended. The phone call where I learned that the hoped-for video confirmed the group’s presence at the restaurant on the reported date, but that the camera turned to their table was broken and there was no footage to “prove” what had happened.

What we ended with was two people’s word (two staff at the restaurant) against two others – the house staff who insisted that the whole story was a lie. Unless my daughter or her housemate could describe, themselves, what had happened that day, the case was closed

The supported living agency had conducted its own “investigation” and we met with them to hear their findings. “She didn’t want to eat her hamburger,” began the bigwig regional supervisor whom I’d never met before but who emerges in full defensive mode to run these conversations.

(“Why did they get her a hamburger??” was my younger daughter’s first question when I caught her up on what I’d learned, later that day. “Exactly,” I said.)

“Why did they get her a hamburger?” I asked the bigwig supervisor. “My daughter would never order a hamburger there.” Bigwig said there had been “miscommunication” and “misunderstanding” but “everyone meant well” and “there was no wrongdoing.”

I called bull!*@#, in so many words.

Here’s what I know. I know that if staff ordered a hamburger for my daughter, it means they hadn’t asked her what she wanted or given her the chance to say for herself what her choice would be. If ANY opportunity had been offered her, she would have typed “cheese grilled sandwich french fries” which is clear communication to anyone with even basic English, and difficult I believe to misunderstand.

I also know that she would have been agitated and unhappy about this. Not only does she not even LIKE hamburgers – but also, she has autism. People with autism don’t like changes to their routines. Not having a grilled cheese sandwich is a big deal change to that restaurant’s routine. My girl was entitled to be unhappy about all this, and to show it.

I don’t know – strictly speaking – whether staff pushed her around and hit her up the side of the head. But I don’t need to know that to know that she was abused that day.

And I don’t know when our society will learn to understand this – that people who have more difficulty communicating their needs have the same rights as anyone to having those needs heard and understood and met.

For my daughter, having a hamburger handed to her that day was just a different version of a slap up the side of her head.

The bigwig supervisor certainly doesn’t see things this way. She has stuck fast to her “misunderstanding” story and added for good measure, “staff in our homes across the state face accusations on a weekly basis, that are almost always unfounded.” Her definition of “unfounded” clearly doesn’t match mine – nor very likely that of the clients or families who bring the other accusations she brushes off so dismissively.

This “miscommunication” versus “mistreatment” description is not just a question of semantics, though I think that’s what the residential agency wanted to imply. I need those caring for my daughter to understand that without appropriate communication, they are not providing her with adequate care. I need them to acknowledge this and be accountable to it. This is something I will watch carefully for in the future, as she continues to rely on others to meet many of her most fundamental needs.