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An open letter to autism-free 'advisors'
A mother with autistic kids gets a lot of unsolicited advice at times.

By:

Karla Akins
Saturday, July 28, 2012 - 16:56
 26

Photo: Karla Akins

A mother with autistic kids gets a lot of unsolicited advice at times. I can't tell you how many times someone has said they've watched "Rain Man" so are an expert on the subject. There have been days in my life when I wanted to hand people a letter, or wear a sign that says something like the following:
 
Think you know a lot about autism?
 
Well, here's what you don't know:
 
You don't know what it's like accompany twin boys with autism to the doctor, to have your arms ache with fatigue from two strong-willed, physically powerful children pulling, tugging and fighting every step you take. You haven't experienced the humiliation of judging eyes glaring at a store, at a restaurant, a family reunion.
 
You weren't there to experience the horror of watching four male nurses wrap your 9-year-old up like a burrito and hold him down to remove a splinter from his foot, to give him a shot, to start an I.V.
 
Have you ever driven three hours to get to a specialist's appointment with two kids with the stamina to scream all the way there? What about a full night's sleep? Enjoy those? Then you have no idea what I went through each night as my babies rocked themselves back and forth, banged their heads on the wall, tore up their beds so they could sleep under their mattresses, and how my body never relaxed because the boys' safety was always a concern.
 
Ever been to a hotel overnight with a pair of autistic twins who are screaming because they are scared to death because they don't know where they are? Ever gone to a restaurant and have your children lick the floor, sniff someone's shoes, pull another person's hair?
 
If you don't know what it's like to go for days without showering, to never eat an entire meal uninterrupted, to never sleep for an hour straight, you have no right to judge my walk with autism. You have no right to point your finger and claim that you would do better. That "all those children need is a good spanking."
 
If you can do better, then why don't you? Why don't you call and offer to watch my children? Help me with my housework?
 
Walk a mile in my moccasins. Then you can point a finger. Then you can give me advice.
 
But until then, keep your thoughts to yourself. I don't want to hear them. You haven't earned the right to advise me until you've the courage to walk beside me, changing the diapers of an eight-year-old, longing to hear "Mama" spoken, wishing for a "regular" Christmas.
 
I have no interest in your so-called wisdom until you have endured all these things, too.
 
What I am interested in, what I do long for, is a compassionate friend. A friend who will listen. A friend who will encourage, not judge. A friend who will hold up my feeble arms, and give my head a place to rest.
 
These you can give me.
 
These are what I need the most.
 

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Comments: 26
anonymous
Graft Aug 12 2012 at 3:18 AM

I have a low level autism, and was only recently diagnosed, so unfortunately I passed it on in my genes, and unfortunately my child has it far worse than I do.

After this, I opted to become sterilized, so that I won't have any more children that may be worse off than he is.

Could they be "normal" if I had them? Sure. However, it is not worth the risk, or the suffering of the child, or the cost to the taxpayers that will have to care for them when I am gone.

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KarlaAkins's picture
Karla Akins Aug 12 2012 at 4:59 PM

Thanks for your comments and for reading and posting!

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anonymous
KaDavis Aug 11 2012 at 10:34 PM

It's heartbreaking that even after all the explaining, some people will never understand. The twins are blessed to have you as their mother and I know you are blessed to have them.

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KarlaAkins's picture
Karla Akins Aug 12 2012 at 12:13 AM

You hit the nail on the head - I'm the one who is blessed!! I am so grateful to be their Mom!

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anonymous
Enter your name Aug 11 2012 at 6:58 PM

If you know your kids are going to be disruptive at a restaurant and ruin the experience for other patrons, why would you even bring them?

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KarlaAkins's picture
Karla Akins Aug 11 2012 at 8:03 PM
Thanks for asking this question. The sad fact is, many parents don't and they live isolated, lonely lives. Just because you have autism or children with autism doesn't mean that you don't have a right to a full life in the community. I wrote the above article and because I DID take my children into the community, now at age 17, they are able to function well, order from a menu, and act appropriately in public. How will they learn if they aren't given the opportunity? They have just as much right
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to go out as you do. And my children didn't ruin the experience for other patrons, but often, other patrons did ruin the experience for us. Thanks for posting.
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anonymous
JAndy Aug 12 2012 at 4:40 PM
Great response. Although I do believe that other patrons were impacted (you said yourself that they pulled someone's hair), you have the right to be out and about with the boys. I wonder if the folks questioning this would prefer for them to be shuttered in the home 24/7 and how THAT would turn out. After experiencing life outside of the home,surely these guys have learned what's appropriate, and what is not (mostly). If I came across your family out and about, and one of them did something completely
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odd, I would send a beer or two to you and your husband.
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KarlaAkins's picture
Karla Akins Aug 12 2012 at 5:00 PM

Thanks for your great comments and for reading and posting.

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knightsnymph
knightsnymph Aug 11 2012 at 1:35 PM
Autism isn't the same as being poorly disciplined. Autism is having a child or being an adult who sees the world different. Too much talking, background noise, and touch can disrupt them, while to us it's an annoyance. Too much stimulation of any kind, can overpower their attention span (like what you'd see at a restaurant, all the colors, people, tastes..) These are not poorly disciplined children or adults. This is not something you solve with medicine or discipline. You use understanding and love
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to teach them right from wrong and to guide them in life, just as you would anyone else. I have 4 autistic friends I love and have fought for since I met them. They are no different from me, just see the world a bit different. I hope that you know, while I'm too young to be ready to be a mom yet, and I have no idea how it feels to be one struggling with the outward judging, I have a lot of respect for you and your walk with autism and your twins. They sound, excitable, happy and healthy, if sometimes troubling with autism flares. But I wish you and the parents like you, respect, and the knowledge you may be fighting, but you're doing a lot of good.
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KarlaAkins's picture
Karla Akins Aug 11 2012 at 8:06 PM

Thanks so much for your encouraging post. My twins are 17 now, and do very well in public because I exposed them over and over again to public experiences. Too many parents don't because let me tell you, it's a lot of work and you get a lot of judgmental attitudes, opinions, stares. I wrote the above article to bring awareness to the issue because I know too many families living isolated, lonely lives.

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anonymous
Enter your name Aug 11 2012 at 1:21 PM
In the following, I am restricting myself to discussing people with severe autism (and possibly mental retardation). Understand that there is a large group of people with milder autistic symptoms who function well. There is even a movement among some high-functioning autistic people to reject the idea that autism is an illness at all -- they rail against the idea that they should be neurotypical at all. I am a neuropsychiatrist; I treat people with autism for a living. As far as I am concerned,
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no one should judge the parenting choices (barring abuse and neglect, naturally) of a parent of a child with autism. People with autism can have all kinds of issues that you might not really have heard of unless you deal with this community on a regular basis -- severe insistence on sameness, motor stereotypys, hypersensitivity to certain kinds of sensory inputs, et cetera. The list is really endless. These issues mean that traditional approaches to discipline are necessary, but not sufficient, when dealing with severe autism. Unfortunately, access to care is atrocious, at least where I live. The medications are only useful for controlling the worst aspects of behavior (self injury, aggression, ect.). Finding someone who is competent at prescribing these medications to this population is a task in itself -- not even all psychiatrists are sufficiently trained to do this. The best treatments, of course, such as applied behavioral analysis, are difficult to find and can be expensive. In short, if you are not educated on this matter, please stop making superficial comparisons between autistic behaviors and misbehaviors of non-autistic people. These comparisons are not always justified. People with autism and their caregivers need empathy, not judgment.
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KarlaAkins's picture
Karla Akins Aug 11 2012 at 8:09 PM

I appreciate so much your input on this forum. It's rare to find professionals with the kind of passion and compassion you've shown here. We need more like you!

You're right. I live in rural Indiana and the treatment and education is in the dark ages where autism is concerned. It's frustrating. I am very, very grateful to you for your insight here. Thanks for reading and posting!

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anonymous
Matthew Aug 11 2012 at 5:12 PM
I'm one of the large group of people with milder autistic symptoms. My opinion is that this woman needs to learn to deal with her sons' needs better. She doesn't need applied behavioral analysis (which is essentially a fancy style of dog-training, applied to humans), or psychiatric medications. I am not going to say that she has an easy job, but if she has such severely autistic children, maybe she should not be taking them to hotels or doctors three hours away or restaurants. Dealing with autistics
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should be a learning process for both the parent and the child. From her description in this article, it does not sound like she listens to her children very well. They may not speak and they may be difficult to take care of and strong and demanding, but if she wants them to respect her, I think she needs to respect them and learn to understand them and what they are experiencing. I know it isn't as simple as just disciplining them. It is a long and difficult process and I do not envy her for it. But if she is going to keep putting them in uncomfortable situations, obviously they are going to react badly. She should be looking for ways to work with them, not fighting them at every step of the way.
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KarlaAkins's picture
Karla Akins Aug 11 2012 at 8:37 PM
Wow. Really? I need to learn how to deal with my sons' needs better, eh? My sons are 17 now. I wrote the above article as an awareness to people of what I went through when they were small and what I personally know exhausted parents go through day after day. I didn't use ABA for my children but I did use medications that helped them quit hurting themselves and others. It doesn't sedate them at all, but it does enable them to function in life and learn. And no, it wasn't easy. But because I refused
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to isolate my children, my almost-18-year old children are able to travel to hotels now without being terrified. We just returned from a week-long trip and stayed in three different hotels. They slept soundly through the night. It wasn't always that way. But if I had given up on exposing them to new situations, they'd never learned how to cope with them. As for doctors three hours away -- the only doctors in rural Indiana that specialize in Autism are at Riley Children's Hospital in Indianapolis -- three hours from my home. We make the trip there twice a year. We must for their medical needs. As for not listening, if I hadn't pushed the preschools to use sign language and picture cards with my children, they wouldn't be speaking today as well as they do. Their speech is a little difficult to understand but these days I can hardly get them to shut up! I have great respect for my sons and they have great respect for me. I didn't allow them to abuse me. Too many moms do allow that. I didn't. I did keep putting them in uncomfortable situations because life is full of uncomfortable situations. I homeschooled them after first grade until 9th grade, but that didn't mean we lived in a cave and killed our meat with a club. We went to museums, countless field trips, and church every Sunday and Wednesday. And they are thriving now because I REFUSED TO ISOLATE THEM. YES! Mothers MUST fight every step of the way. They MUST. And let me tell you, it'd be a lot easier not to. It'd be a lot easier to sit at home and not take them anywhere. But because they were constantly meaningfully engaged, they learned to cope. I kind of call it my "saturation theory." They finally became able to tolerate change, disappointment, new experiences because the saturation we gave them desensitized them to the fear of new things. They overcame a LOT of fears. And I'm extremely proud of them for that. Matthew, I'm not a perfect mother, but I am a good one. And I do know how to deal with my boys. Ask anyone who meets them.
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anonymous
JAndy Aug 12 2012 at 4:45 PM

And let's face it. Mom and Dad will not always be here and these boys will be on their own. I think it's wise to give them skills, even if that journey is uncomfortable. I have 2 healthy teens and stumbled upon this by complete accident. I am really discouraged by those judging.

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tarrant's picture
Tarrant Aug 11 2012 at 12:04 PM

Just a special note to those commenting on this thread--we love a good discussion at mnn but personal attacks and name calling will not be tolerated. Share your opinions but be respectful in the way you share them. Thank you.

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anonymous
J Aug 11 2012 at 11:12 AM

You will know me when you see me in public. I walk in your shoes every day (but I admit not to your extreme). I will not judge, just simply offer a knowing look and acknowledgement...a smile for you to know you are not alone.

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KarlaAkins's picture
Karla Akins Aug 11 2012 at 8:26 PM

And I will nod and smile back!!! Thanks for the encouragement and for reading and posting!

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anonymous
Research Aug 11 2012 at 9:29 AM

Discipline will not cure autism. It's a verifiable neural disorder, not a discipline issue so beating a child with autism doesn't accomplish anything other than allowing monsters to show the world what they truly are.
Discipline must be understood to be effective and autistic children simply don't understand.

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KarlaAkins's picture
Karla Akins Aug 11 2012 at 8:52 PM

Disciplining a child with autism has to be done through the back door. There's no way to confront a child with severe autism about a behavior and have that work. It's just not that simple. People who believe that all these kids need is a little discipline (i.e. spanking) have never worked with children with autism or else they would realize how ridiculous their theories are. Thanks for your post. You are absolutely right.

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anonymous
Guest Aug 11 2012 at 11:20 AM

Nobody said anything about curing autism. What discipline does is reinforce positive behaviour by reprimanding poor behaviour. Autistic children do have self-control, they just need more guidance in developing it. They can and do understand. Relegating them to the role of mindless reactive agents is a disservice to everyone, parents and children alike.

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KarlaAkins's picture
Karla Akins Aug 11 2012 at 8:49 PM
Wow. You must be a true expert in neuroscience to come to such a conclusion. First of all, I do agree to an extent. I would say that older children with severe autism can learn self-control but only after they are much older than the preschool stage. Until then, it's almost impossible for young children with severe autism because they have no way to modulate their emotions. There is no calming them and no reasoning with them (in my experience with my sons and other children). I for one was not content
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to watch my sons chew their hands off or give themselves sub-dermal hematomas from banging their heads on the sidewalk. Until you walk in my moccasins, you have no right to make such blanket statements nor to judge my methods.
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anonymous
Mark Aug 11 2012 at 11:49 AM

hmmmm... Also nice the way that you lump all "autistic" people into one category. Autism spectrum disorder includes multiple disabilities and describes people who may be virtually indistinguishable from "normals" and others who cannot communicate and who have incredible issues with sensory confusion and oversensitivity.

Nice to overgeneralize and say "they do understand." Perhaps a little more nuance and investigation is in order?

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KarlaAkins's picture
Karla Akins Aug 11 2012 at 8:47 PM

Exactly right, Mark. Autism is a spectrum disorder that includes the very severe to the very mild. I myself have autistic traits as does another one of my sons. I do not have the severe problem of modulating my emotions that my twins have but I do like sameness and order and I really don't care for surprises! :-) Thanks for posting!

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anonymous
Farmer Brown Aug 11 2012 at 8:54 AM

It is funny that autistic children sound just like badly behaved children. "Ever gone to a restaurant and have your children lick the floor, sniff someone's shoes, pull another person's hair?" Uhh...yeah, but those kids were poorly disciplined, not autistic.

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