Autism

PICA Awareness: A debilitating condition, common with autism

PICAhospital

What’s PICA?

Pica is a mental health condition where people compulsively swallow non-food items. For my son, Charlie, who has profound autism, a “PICA item” is… everything. Wrappers, toys, dirt, plants, paint from the wall, anything on the floor, rubber bands, nails, coins, dollar bills… You name it. Charlie compulsively swallows everything he sees.

What causes PICA if not anemia?

Sometimes, PICA is caused by a deficiency like anemia. In those cases, the fix is easy: Iron. But in many cases, like Charlie’s, there are no found causes and no solutions…

When I hear people make blanket statements such as “autism is a gift,” it angers me. Is it? Because my child doesn’t even grasp the danger of swallowing screws.

PICA and autism

Charlie is 10 years old and diagnosed with Level 3 Autism—severe autism.
My biggest worry used to be whether Charlie was going to have a happy, independent life, but for the past few months, my primary struggle has been to keep him safe.

Charlie has PICA, which means he is constantly swallowing non-food items. It’s compulsive.I’ve stripped his room of anything that he could possibly chew off and swallow overnight, but he’s creative.

One thing I hadn’t thought about was the beautiful decals on his bedroom walls, and recently a screw from his dresser.

The surgeon just found a screw (and rubber bands) inside his colon.

PICAscrew

Where does it happen?

Everywhere. PICA happens everywhere and with everybody–when he’s alone and when he’s surrounded by people. It’s compulsive. Everyone on his care team has witnessed it: his developmental pediatrician, his general practitioner, and of course, his teacher and ABA therapists that he spends so much time with. Yet, no one knows the root cause or how to stop it. No one. His labs were perfect. I just took him to the doctor again last week, but there’s just no help. I’m desperate for help.

What I want people to know about PICA and autism

I want greater PICA awareness and more solutions. Anemia and deficiencies are clearly not the only cause for PICA.

Charlie doesn’t have any known deficiencies or parasites.

– His condition isn’t linked to inflammation or malabsorption.

– He doesn’t eat non-edible objects for attention and does it even when he’s alone.

– A functional assessment was done. The function of the behavior is “automatic”

– He doesn’t like chewy toys

The lack of explanation has left me feeling defeated.

Do me a favor, the next time someone insists that “everyone is equally autistic” and “severe autism isn’t real” due to the non-linear nature of struggles, remind them of this: even on their most difficult day, they wouldn’t choose to swallow a screw. In contrast, even on Charlie’s best day, he wouldn’t understand the danger of ingesting non-edible items.

Had you heard of PICA before you started following me? If so, was it linked to a deficiency or was it a mystery case like Charlie?

Our previous ABA therapy center reported us to CPS after Charlie ate some non-edible items. I’m still mad about it and very thankful for our current center, who has been consulting with PICA experts instead.

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3 Comments

  • Reply
    LetsGo
    2023-09-23 at 5:18 PM

    I’m sorry to hear your family is struggling so much with pica and I hope you get some relief soon. My son has shown pica behaviors as well (he ate a foam earplug yesterday and refused to spit it out…thank God he didn’t choke). He has other dangerous behaviors that risk his life and safety and requires constant close supervision for his own well-being. I also get very frustrated with the things you’ve observed in the autism community, which is why my family no longer considers ourselves part of it. I’m not going to celebrate a condition that causes my son harm. That’s absolutely absurd, and people who insist that I do so while working against my son’s best interests and claiming they can more effectively advocate for him than I can are either clueless or sociopathic. Concerns like pica should be top priority in advocacy and education, not shoved to the sidelines. Thank you for taking the heat to share the realities of our kids’ lives.

  • Reply
    Kerry
    2023-10-02 at 6:39 PM

    In the last sentence you mention PICA experts. Would you be willing to share names? We have no PICA experts in our state and we would be willing to travel. Our 15 year old son has struggled since he was about 3. I appreciate this article. My son is verbal, he knows he shouldn’t do it and like you said, it’s automatic. Thank you for writing this. It is a condition that needs more research and answers.

  • Reply
    Winnie
    2023-12-21 at 11:12 AM

    I am 36 and is autistic. Similarly, I just go for non edible items like hand sanitizer or dirt or plastic bottles tops etc don’t ask me why it just happens. I will also just cross roads with no sign of danger or jump into water without being aware of danger. None of my medical team can explain it.

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