The “Autism Stigma”

Joshua enjoying the Pinewood Derby with the Scouts/AHG troop from our Parish
Joshua enjoying the Pinewood Derby with our Parish Scout and American Heritage Girl Troop

Joshua likes to crawl along with his head on the ground. One of the odd behaviors to address.

I’ve encountered countless people on our journey into Autism Spectrum Disorder who either have a child on the spectrum, or know of a child on the spectrum.  It is journey mixed with hope and heart ache.  I am amazed and saddened to hear of parents who have been encouraged to seek out an evaluation for their child, yet refuse to do so, out of feeling that their child would be labeled or have a stigma, or simply hoping they would grow out of it.  I am forever grateful for our family doctor who had concerns about Joshua’s lack of speech development at age 2.  I could certainly explain it away, with him being born into a family of talkers.  He was the “contemplative one”.  I also really prayed that he would just start talking more, realizing that could be a problem down the road, given how much his siblings talk!  However, after looking at normal speech development, talking to friends with professional background in education and children’s mental health, I agreed to go have a speech evaluation done.  Then came the autism diagnosis.  That would explain so many of his odd behavior.

This got me thinking about the meaning of “stigma” and I looked it up in the dictionary.  It seems that it stems from having “a mark of shame or discredit”.  So, I looked up “shame” and it seems to focus on the behavior of the person which causes one to have  “the painful feeling arising from the consciousness of something dishonorable, improper, ridiculous, etc., done by oneself or another: She was overcome with shame.”  Initially, young kids don’t realize how their behavior affects others.  It has to go with their focus on the ID part of their nature, which is normal.  However, they do start to learn about how others are important and have needs too, as they begin to learn empathy.  Now, it stands to reason, that an autistic child would only be helped by having as much early intervention and treatment as possible, to help manage their behavior and learn social skills.  In my opinion, any “stigma” would result in allowing a child to continue on, untreated and then expecting the child to “shape up” or “grow out of it”, when behaviors have been further entrenched.

Over and over again, I heard it said, “early intervention is the key”, and, they are right!  The brain grows the fastest in the first 5 years.  Catching autism early will do nothing but good with all the treatments that are out there.  Starting a child on a specific carbohydrate diet in order to help everything work to it’s best physiologically is much easier with a younger child.  Joshua eats the healthiest out of everyone and actually loves the treats I give him that agree with his diet.

Behavioral issues are where we, as parents, often get caught up with feeling the “stigma” of autism.  Joshua, for the most part, is a good kid.  However, he does dump books out of shelves, run in circles, and the most challenging thing I have to deal with is his propensity to want to lay down on the floor, no matter where we are.  I have had him suddenly decide to lay down on the floor at Target, at Church and at the Library.  I will tell him, “no, you need to get up” and stand him up, but, lo and behold, he’s getting bigger and I won’t be able to do so for to much longer, especially with how he eats!  This kind of behavior is odd to come across.  My goal is to train him while he is still manageable.  I am going to need help with that, however.  I’m not that big and I’m the primary care giver as my husband has a demanding work schedule providing for us.  Joshua gets away with this behavior, to some extent, due to his age, but it isn’t acceptable social behavior and he will have to learn when and where it is okay to lay on the floor.  (Hint:  not at the foyer of the Church while Mommy is talking with some parishioners.)

So, how do I deal with this?  Do I consider it a stigma for Joshua?  To be honest, I see myself as an advocate for Joshua.  I let people know he has autism, but at the same time, I do try to train him how to act in public, while also giving him an outlet, trying to understand what he is going through at the time.  If my child had any other condition, I would expect for him to be the best that he is capable of being.  For example, if he were to be confined to a wheelchair, I wouldn’t expect him to be like every other kid and run and play at the playground, etc.  Instead, I would expect him to wheel around and interact in ways he could, in a positive way with his peers, confident in who he is and being who God created him to be, giving glory and honor to God in all he says and does.  That goes for all my kids!

Something I have considered through my parenting in relation to this: Is the child considered an extension of the parent?  Or, is the child considered a gift?  I have made the assumption that when people understand that my child has autism, there will be compassion and understanding.  There isn’t a known cause of autism; scientists are trying to figure it out.  I don’t know if it will ever be definitive, but despite that, my view is to get educated and learn what can help the child improve and be able to function in the world to the best of their ability.  What they do know is early intervention helps a lot.  My job, as a parent, is to find out what is out there and what would benefit my child the best.

I have come across people who have low tolerance for my child’s behavior, and this goes for any of my children.  Perhaps they haven’t had to walk down a similar road, or perhaps they are just self-involved to a point that when someone makes them uncomfortable, that person needs to change or leave.  Everyone has their opinion on child rearing.  Instead of seeing that as a negative thing, I try to look at it objectively, this is not always easy, especially in public.  Whether family members, acquaintances, or someone off the street, I will limit my child’s exposure to that person, and make any exposure as positive as possible, for my child, first of all, and for that other person, if possible.  There are some people who just can’t handle it.  I can’t change them.  I am shocked at the rudeness of some people, but I am also grateful, even more, for the compassion of countless others.  I need to continue to be assertive, which is not easy for me, and stand up, respectfully for my child, who is pure and innocent in so many beautiful ways.  This can happen with any child or situation.  The challenge is to take the emotion out of the equation and focus on how you want to train your child so they can benefit.

Instead of focusing on having a stigma, in regards to autism, then, I would rather focus on a related word:  “stigmata”, which means: “marks resembling the wounds of the crucified body of Christ, said to be supernaturally impressed on the bodies of certain persons, esp. nuns, tertiaries, and monastics.”  I would rather have my child exude compassion, “a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering,” for others and for himself.  As we walk along this road, in humility, how can we respond any other way?  Everyone has a story to tell and the need for love and compassion.  That is what I want, for all my kids:  to act like the Images of God that they are, and to treat others the same.  I will surround my child with the type of people who will encourage the best in him and take in stride those who aren’t able to do the same, for whatever their reason, and trust in God to make up the difference.

This entry was posted on Monday, May 31st, 2010 at 10:15 am and is filed under Autism Diet, Autism Treatment, Diagnosing Autism, General Autism Info, Sensory Integration Disorder. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

4 Responses to “The “Autism Stigma””

  1. Marianna Says:

    I really appreciate this post 🙂 I love the idea of stigmata not stigma, a wonderful thought 🙂 I have a 10 year old with severe autism. He’s gone through the intensive home therapies, the diets (which for him, were ineffective), and then I realized he doesn’t need to be cured. He doesn’t have a disease, he has a difference. While I agree with you that working on a child’s behavior while young is important (whether the child has autism or not), I have also come to realize that a child with autism is still first and foremost a CHILD. If I had t do it all over again, I would have a little more respect for him as a person, and let him develop in his own time, which autistic people DO. They’re on a whole different schedule than us typical people, and that’s OK. I think too often professionals, well meaning as they are, try to scare us into thinking that if you’re not doing everything possible NOW, while they’re little, then the time will run out, the sand out of the hourglass, and you’ll be ‘stuck’ with an autistic person, with no hope. There is no time limit on how God can work in a person’s life, and there is always hope.

  2. admin Says:

    Thank you, Marianna, for your post! You are right in that we need to value each child for who they are. I am grateful that interventions do continue to help kids on the spectrum, regardless the age. If you don’t mind me asking, what diets have you tried? I know I’m biased, but I really want to encourage you to keep looking at diets. The GF/CF doesn’t go far enough, in my opinion. I just heard this podcast tonight, from another woman who tried the GAPS diet and is seeing some progress: http://www.cheeseslave.com/. It encouraged me and I want to pass it along. The diet not only helps autistic children, but us adults, too, with the various ailments we have. Don’t give up hope and please keep me posted in how your son is doing. It is quite the journey with many bumps along the way, but we all do our best. Thank you, so much for posting and God bless!

  3. Marianna Says:

    yes, we stuck with GAPS for…….8 months before I decided enough was enough. It did not have any effect. The only thing that has helped him nutritionally speaking has been fermented cod liver oil. We all also eat basically a paleo/primal/traditional diet so that probably helps some because it’s nutritionally dense. I am glad that dietary interventions help some children! For us it was a no go. I will also say that, as they grow things change behavior wise. When they are 3 or 4, it’s a whole different thing than when they are 10 almost 11 like my son is now. There have been unexplained improvements and spurts in development and also new, seemingly ‘out of the blue’ behavior, so, the strategies have to change. What worked when he was little doesn’t necessarily work now. It keeps me on my toes for sure 🙂 I’m very impressed that you can get to mass with your son! That is something we are working on. Currently we usually do not take him because he is in a phase of getting very agitated very suddenly, which can result in screaming, throwing things etc. Hopefully we can all get back to mass together soon 🙂

  4. admin Says:

    Thanks for your response, Marianna!
    Yes, Mass is still doable, but we have our routine. I take him for a walk around the inside of the church so we can still hear the readings and then we come back and he looks at books for the rest of Mass. So far it is working. I’m praying it will continue. You are right about being kept on your toes! It’s hard to know, nutritionally what works and what doesn’t and to what extent it helps. I’m at the start of that journey and we are meeting with a nutritionist and a DAN doctor to help us along the way. I hope things get better with your son regarding Mass. We actually sit in the front so he can see what is going on and it cuts down on the stimulus, to some extent. However, he still wants to crawl under the pew. I’m working on that as it’s cute now, but not so much when he’s older! God bless you, on your journey, Marianna! I hope your son continues to improve in God’s perfect timing!

 

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