I Love You I Hate You: Autism and the Tragedy of Adam Wilson
Bono Means "Good" for a Reason

Kim Stagliano Talks Halloween and Autism on CafeMom's The Stir Blog

Halloween 012 Thanks to Julie Ryan Evans for asking me some questions about what's Halloween like when you have a child on the spectrum. Please pop over to her blog The Stir at CafeMom to leave your own suggestions and thoughts, won't you? The photo is a costume I made for Bella in Kindergarten. She was Leo the Late Bloomer whose first words are, "I made it!" Here's to hope friends, and lots of candy for Mom and Dad on Halloween! Thanks. KIM

By Julie Ryan Evans

Halloween can be frightening and hard to explain to any child. Talk of ghosts and witches, scary masks, and grave stones in the neighbor's yard can prompt plenty of nightmares.

For children with autism, however, it can be particularly challenging to celebrate the holiday with all the new rules (yes, you can actually knock on someone's door and ask for candy) and nuances it brings.

Kim Stagliano, author of the new book All I Can Handle I'm No Mother Teresa, is the mother of three girls who have autism. I talked with her about her experiences with them and Halloween over the years and what other people can do to make the holiday a little less frightening and more enjoyable for children with autism and their families.

What challenges do children with autism face when it comes to Halloween?

Oh, where to begin? Well, Halloween is inherently abstract, and that can be difficult for some kids on the spectrum. It's hard to separate the illusion of costumes from reality. The concept of not going into a house after ringing the doorbell was tough too -- 364 days a year you go to a door, ring the bell, and walk in, and here you have this one night where everyone is out and yet you can't walk into the house? It confused my oldest daughter especially. 

Any anecdotes or examples from your own family?

Read the full post and comment with your Halloween stories at The Stir at CafeMom.
 

Comments

ML Garcia

Well said Concerned Mom and Angie.

Halloween is pointless and scary to our kids. They don't like to wear costumes and the scary costumes out there give them panic attacks! The lights, sounds, etc. = sensory overload. So we carve our pumpkins, put on a funny hats and welcome trick or treaters and enjoyed the ingenious costumes little kids wear. Last year, they weren't feeling well, so we turned off all the lights, lock the doors and spent Halloween eating popcorn, GFCF pizza, and watching their favorite movies in the basement.

When we stopped trying to celebrate Halloween the same way everyone else did and became totally flexible about it (all plans can be cancelled the last minute) is when we finally had some fun. Halloween is just not worth the time or important enough to teach them about structure.

Concerned Mom

Aspie, First: you don't need to speak for the low-functioning kids. As evidenced on this website, their parents speak for them and they do it very well without any help from you. Second: You seem to have completely missed the point of my post. Plain and simple, your post was rude and insensitive. It was condescending. Rudeness and insensitivity don't convey the compassion you claim to feel for the severely affected. Third: You can be 'willing to bet' all you want that the majority of autistic kids know what to do on Halloween and are therefore high functioning just like you but the reality is that if that were true, there wouldn't be websites like this one, DAN doctors, and groups like TACA and Generation Rescue where the majority of contributors are scrambling for solutions to issues like feces smearing, head-banging, seizures, and other symptoms associated with autism. You DON'T speak for those children. You do not live their lives, you do not know their suffering, your experience is not the same. Autism, as you know, is a spectrum and your end of that spectrum is a world away from the end that the low-functioning kids live on. The challenges of the high functioning autistic individual are not the same as that of the low-functioning individual. Therefore, your belief that you 'share the same condition' is a false one and it is presumptuous of you to think that you can speak for them. Their parents, who are witnesses every minute of every day to the screaming, the self-injury, the seizures, the suffering of their low-functioning children, make far-bettter spokespersons for their children than you do.

Angie

Aspie,
I am sure your intent was to be supportive, however, the others here are right, your comments come off as insensitive...

when you said "I'm willing to bet that the majority of autistic children know what to do on halloween."

That thought that 'the majority of autistic children know what to do on halloween' feels like an insult to us parents whose kids DO NOT have high functioning like you do.

And then for those whose kids might 'know what to do' but they do not understand or want to participate, but simply ' know what to do', you know?

Then you said "I speak on their behalf because many of them are unable to speak for themselves. Neurodiversity advocates are largely high functioning because low functioning autistics have more impairments in verbal communication."

This is also felt as an insult to those of us who UNDERSTAND our kids up and down and sideways, who love them and live with their pain each and every day.

The difference between High functioning like yourself and low functioning (like so many of our kids here who have various other MEDICAL issues that go along with their 'low functioning' such as painful GI issues, Severe OCD, severe anxiety, mito issues, autoimmune issues, etc)...IT IS NOT SIMPLY THAT HIGH FUNCTIONING EQUALS THE ABILITY TO COMMUNICATE AND THAT LOW FUNCTIONING IS JUST HIGH FUNCTIONING WITHOUT COMMUNICATION....it feels like an insult and shows that maybe you do not know or understand just what it means to be low functioning.

One son of mine is low functioning BUT he IS a verbal communicator...my other son is HIGH functioning but hasnt said more than one 'word' a month since he regressed severely around 18 months or so...

When you said "I can speak for them because I share the same condition without verbal impairments."

I have to say that you seem to be High functioning, and I am sure you DO mean well, and do not intend to insult any of our kids or us parents.....but to say things the way you are saying them really looks as though you are meaning to say that you can speak better than someone like a parent, who doesnt have Autism (any variety/any level of functioning)...simply because you are a high functioning aspie...

and that just simply is not true...

I do honestly think you mean well, at least I hope you do...and for future reference, it might help to reread your comments first and try to think of different 'ways' to say the thing you are thinking/trying to explain, because there is NO ONE on the PLANET more dedicated to advocate for ANYONE with Autism than their loving parent/caregiver...I know there is NOT ONE person on this planet that will now or ever care more or want to advocate more, or KNOW my kids more than I do, as their Mom...plain and simple....


Carolyn M

Correction to my previous post:

I should have added "or are a close family member of a child who is so affected".

Sorry for any confusion.

Carolyn M

Aspie:

Concerned Mom was correct - your post comes across as VERY insensitive.

In addition, for "the majority of autistic children" to know what to do on Halloween, that portion of the population of children with autism would need to be high functioning. Children with severe autism would not - and I am not referring to the first time they go out trick-or-treating. Do you have actual data that shows "the majority" of children with autism are actually high-functioning? If so, to what age groups of these children does this apply?

Unless you have regressive autism with gastrointestinal problems, mitochondrial dysfunction, and immune system problems then you are very unlikely to be able to speak on behalf of children with severe autism.

Refugee

For years we were virtually forced out of our house because we couldn't cope with children coming to the door looking for sweets.

Aspie

Concerned mom: I'm just stating things as a matter of fact. I'm willing to bet that the majority of autistic children know what to do on halloween. I don't have a lack of compassion for low functioning kids. I speak on their behalf because many of them are unable to speak for themselves. Neurodiversity advocates are largely high functioning because low functioning autistics have more impairments in verbal communication. I can speak for them because I share the same condition without verbal impairments.

anonymous


Cafemom is a great forum to share information about the autism epidemic, vaccines, etc.

A lot of moms there are concerned about these issues and willing to hear/talk about it. Many are not, but it's still a good place to reach out.


Concerned Mom

Aspie, You have stated the obvious in an insensitive way. Yes, many of these parents have children who are lower on the spectrum than you are but you did not need to state that in this open forum. The parents ALREADY know this about their children. They KNOW that someone such as yourself with Asperger's relates and understands more easily. And that's fine. You are who you are. People just are who they are, no better or worse. But for you to blurt it out as you have, in a way that denotes condescension (as if you're saying you ARE better than those kids. And even though you likely didn't mean it that way, that's how it comes across) not only have you insulted lower-functioning children and their hard-working, dedicated parents, it only reinforces the fact that you DON'T understand what the lives of the lower-functioning kids and their families are like. Many higher-functioning autistic individuals believe that low-functioning autism is exactly the same as Asperger's... that it's just as 'beautiful' with maybe a little more stimming. WRONG. Absolutlely, categorically WRONG. You don't understand the kind of physical and quite likely psychological (it's a proven fact that long-term physically ill people very often suffer from depression and anxiety) suffeing these lower-functioning children experience during holidays, not to mention every other day of the year. And even if you did understand, the tone in your post shows a distinct lack of compassion for this suffering; a distinct lack of compassion for these children and their families. Their suffering is somehow okay because it's autism and since you have it, then it's okay for everyone else to have it no matter what their degree of disability might be. ALL of it, ALL degrees of disability (and the attendant suffering that many of these kids experience) that accompany autism are acceptable to the neurodiversity crowd. These kids are seriously physically ill, often in pain, confused, anxious, upset, socially inept at Halloween and other times of the year. How is this acceptable to anyone? No one wants any other human being, autistic or not, to suffer this way. And out of love for their kids, the parents try to include them in holiday festivities, meeting sensory and diet needs, no matter how expensive or inconvenient. I applaud these parents for their commitment, their dedication, and their compassion and hope that ways of coping during these stressful times can be discovered. Unlike you, I don't make comparisons of their behaviors to my own and summarily spit out a judgment about it. Doing that does not help anyone, least of all the children. And you can not compare yourself to these children. The fact that you have 'always understood the customs of Halloween as a child' immediately discounts you as someone who should compare themselves to these kids. In light of that, and in the distinct lack of understanding and even compassion for the suffering of these lower-functioning kids, the high functioning neurodiversity supporters would do well to remove themselves from the conversations of concerned parents searching for way to recover their suffering children.

Aspie

I have AS and I've always understood the customs of Halloween as a child. Your children must be lower on the spectrum to be so confused by it.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)