Don’t be The Autism Validation Parent
A few weeks ago I wrote a blog about autism and medication and I went on a tangent (shocking I know) about an experience that my wife and I had with a local DFW autism organization and a few parents who made us feel a bit uncomfortable and I named them the “Validation Parent”
I received a large number of emails, Facebook replies and Twits about that phrase and similar stories…so I thought I’d expand on The Validation Parent and hopefully encourage you or those you know…TO NOT BE ONE!
Here’s how the story went…
Our son was diagnosed with autism when he was 2 1/2 years old. Although my wonderful wife was equipped with a degree in Speech Pathology, a master’s degree in Deaf Education and Special Education and had worked as a Sign Language Teacher, a Diagnostician and an Inclusion Specialist in the Texas Public School (insert moan, groan and laugh here) System…when William was diagnosed, we were totally clueless and felt like we were all alone on the Autism Island.
We started researching groups and organizations to get involved with in hopes that we would find people we could relate to and learn from…find a safe place for our family.
We made calls and talked to people and checked out Websites and found a place in the area that we wanted to check out.
I’m not going to name names or organizations because we very much respect this organization and their leaders…they line up with many of our viewpoints and are doing great things…some of their members however made us run in the opposite direction.
We went to an event with a bounce house, candy find, other events that would keep the children entertained. It was great seeing William around others on the spectrum and he always loves bouncing…so that was fun.
While we were all standing around we started visiting with other parents…they were all very nice but we soon would run into a few that just wanted to be validated in their methods.
“You’ve got to be gluten free!” one lady screamed at me.
Okay…well we had our son tested for gluten allergy and he didn’t have one, we put him (and rest of family) on gluten free diet for a while and it was expensive, difficult and didn’t change anything.
“The entire problem is the government’s fault and mercury in shots and that’s what caused it all!” another parent informed me.
Remember…I don’t know these parents. We just got there and they’re trying to push their agenda on us.
“If you don’t do this or that or these or those…you might as well give up”…literally that’s how it came across.
Look…I GET IT…WE ALL HAVE OUR OPINIONS AND VIEWS AND WE ALL WANT TO BE HEARD…but for crying out loud.
The entire experience left a very sour taste in our mouths as we quickly left the event.
Melanie and I have our thoughts on what did and didn’t cause our son to have autism. We have our views on medication and therapy and food and blaaa blaaa blaa. If you want to know them…just ask and we’ll tell you.
But what I realized is that so many parents are just scared…we’re angry, sad, fearful, bitter…you name it.
Except for a limited few, funds are limited, options are going to be limited and inevitability we as parents are going to have to decide what the best path of attacking our individual situations with autism will be.
But we all want our opinions, our ideas, our path to success to be validated as the best one. No one wants to knowingly or willingly pick the path that isn’t good or successful.
No parent goes into it thinking “well, we’ll do the bare minimum and maybe that will help our child with autism succeed.”
We all want to be patted on the back and told “your idea and opinions are the best and you’re doing the best job possible for your child!”
The problem is that THERE IS NO RIGHT OR WRONG PATH when dealing with autism. Just like the ailment, every child on the spectrum is 100% completely different.
All this to say DON’T BE A VALIDATION PARENT…it only ticks other people off or sours them on what could be a very fruitful relationship.
If you don’t like the way my family is handling our situation, then don’t do what we’re doing.
If you think one therapy or medication or treatment is better…then by all means…do it!
It’s not a competition people…you’re not going to get a gold, silver or bronze medal for the way you and your family attack autism.
Your reward and your validation is the relationship and interaction you have with your spouse, your child and the rest of your family.
So if you find yourself in a situation where someone is trying to cram their viewpoint down your throat…just say “hey, I know you want the best for your child. I’m glad that you found a path that you feel is best for your family, budget and situation. I respect that but please don’t feel the need to validate your views to me because our situation is totally different.”
If that doesn’t shut them up…then make up some crazy homemade concoction or remedy you’ve created to “cure autism” and maybe that will freak them out.
Until there’s a “cure”…don’t worry about other families, worry about you and your family and do the best thing for your situation.
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Your story can apply to parenting in general. So many people think that their way is the only way and if you d anything else, you must not really care about the well being of your child. I can only imagine that this syndrome is worse if your child has autism or any other disorder.
Thanks for capturing the frustrating annoyance of an over zealous parent who want to use your child to justify their decisions.
@Shaunta Sheppard@facebook – Have you tried a program on his iPod touch for communication? Proloquo2Go is the most extensive, but it is pricey. It is similar to Picture Exchange Communication System (PECS), but without the large notebook of a million cards to carry around. I think there are a few free programs you can try out to see if using the iPod in general will work. Also you can ask his Speech Therapist (I’m just assuming here that he has one, if not disregard this part) if she or he has the Prologuo2Go program (if they use iPods or iPads) and then they can try it with him in therapy.
Good Luck finding that communication method. My two that have Autism (4 kids in all) have been very picky about what they want to use for communication. They have kind of settled on using several methods together, haha.
I run an Autism Foundation in Jamaica and just staged an event that has broken ground in my country and I still have no freakin clue how to deal with Autism, everyday I feel “loster” – opinion and views are groovy, you are so right …when you are in the belly of the beast it’s real hard- things like living with Autism reinforce that you can never live in someone else’s skin and truly be empathetic to the point of 100 percent comforting to them in their situation, and it seems and this is just an opinion (SMILE), 99.9 percent of the globe hasn’t gotten that yet it, until such time we will just have to try to remain homicide free in our individual lives, lol forgive ppl for they know not what they do….
fond adieu until we meet again 🙂 Maia Chung
Truly I feel this article could apply to parenting as a whole, not just to parents of children with autism. Very well written article, thank you for sharing!
I do have a “success story” in regards to a parent with an opinion that was quite refreshing. So I posted this blog last Wednesday and last Thursday I went to a men’s group where there were other dads with kids on the spectrum. I met a very nice father who started asking me about diet and I just wanted to run the other way…I kept thinking “here it comes, he’s going to bash me over the head because I allow my son to eat whatever…”
BUT that’s not at all what happened! He was very respectful, informative and stipulated that the diet his family was on worked for them while it might not work for others…he was a lot of fun to talk to and I was glad that I didn’t run the other way.
I came home and told my wife! It just goes to show as a parent dealing with an issue–there are two ways to approach it…blast people over the head with your way of doing things or be respectful and share with others what works for you and what might work for them…but allow them to make the decision for themselves.
@Shadowrunner81@xanga – thank you so much for your question. At first my wife and I were afraid of “the A word” because we were ashamed, sad, confused and we didn’t want anyone looking at our son differently. Now I really don’t care. I am on a Mayor’s committee for person’s with disabilities in the city where I live and the chairman is a man with Cerebral Palsy and I asked him “do I call it disabled or handicapped or what” and he said that it doesn’t matter to him as long as you don’t change your opinion of him. I liked that statement.
I think if you ask 100 parents you’ll probably get 50 answers one way and 50 answers the other. I don’t get caught up with “my son is autistic” vs “my son has autism”…in the end, he’s different and I love him just the same and I would hope everyone else would as well.
Instead of getting wrapped up in phrases or words I want people to learn how to adapt to my son and how to help him be as successful as he can be.
Did that answer your question? Thanks for your thoughts.
TheFowler4
This is EXACTLY the sort of issue I deal with as a person with Crohn’s disease. I have people try to throw treatments in my face as if one simple solution will solve an incurable condition. No, people…I’ve tried things, and I know what does and doesn’t work. I get very bothered when people try to push their agendas in my face. Totally know what you’re talking about.
I don’t have a child with Autism so I can’t speak to your situation. The only thing I can relate to is inquiring as to whether or not the word ‘Autistic’ is offensive to you or not. I have a friend with Schizophrenia and she’s told me numerous times that people who refer to her as ‘Schizophrenic’ have it wrong and offend her by not using person-first language. Person with Schizophrenia. Child with Autism. She has Epilepsy not ‘She’s Epileptic’. etc etc etc.
How do you feel about this?
I agree with what you have said whole heartedly.
It’s hard when you have a child that has been diagnosed with autism but at the end of the day, you have to find out what works best for that child and what also works best for your family.
Right now there is such an uprise in knowledge about autism, and I feel as though so many people are trying to find a cure, because that is the only way they think that they can control autism.
I don’t think there necessarily needs to be a cure. I think that we just need to have access to the right funding, supports, and people… and the families lifes as well as the childs life will turn around dramatically.
If you hold hope to a theory such as the gluten free diet is going to cure your child, and nothing ever changes, the parent generally ends up being more angry and distraught at the world. So although it’s great that there are so many theories that work for some children, I don’t think that the focus should be on ‘curing’ a child.
I’m trying to type this in a hurry as I have to run out so I hope it makes sense!
Great, commonsense approach and particularly valuable when you consider that there is much about autism and its management that does not make sense when you’re first confronted with it.