Recognition for the caregivers in the Autism community

There are a lot of discussions all over the place about non-disabled parents of disabled children, disabled parents of disabled children and those that are disabled without disabled children… who can and can’t understand what, who can and can’t advocate what, who’s voice holds more weight… on and on and on.

These things will be worked out over time, hopefully all mutually agreeable and beneficial… a world of peace, love and happiness for all on the horizon.

However, those not being discussed, and I think really should be, are the care givers.

Not part of a community?

caregiverOne day, discussing Autism related issues on Twitter, a woman replied with a rather insightful comment and then was quick to apologize, as she really had no place to get involved in such a discussion.

You see, she is not autistic nor does she have any children with Autism.

What she does have is an amazing amount of love and wisdom within her that had, for the most part up, until that point, been quiet.

As a woman who has cared for many children with Autism and continues to care for children with Autism, she does not feel as though she is a part of the Autism community.

She reads all of the books, the studies, blog posts, she attends seminars and even went to school specifically to do what she does… but she feels that she has no voice because it’s not her place.

To me, that’s not just a shame, that’s a tragedy.

What one has vs what one does not

You see, I have a great deal of respect for those with Autism and those who have children with Autism because they have a lot thrust on them against their will. They are kind of thrown into the deep end of a life that they likely didn’t expect and may not even want (some of them).

They are forced to educate themselves, to research everything they can… they even have to learn to love themselves in ways that many people don’t.

I’m talking about both the parents and the autistics themselves. It’s a struggle for both. It’s big, it’s scary and it’s wonderful too… it’s different for everyone but it’s big all the same.

Care givers (most of them) don’t have that. They don’t have the life changing diagnosis for themselves or their children. They don’t have that cycle of denial, acceptance and all the other emotions and epiphanies that many of us have.

A care giver has to want it, they have to love and they have to need it.

For many parents and even autistics, this will likely be a very foreign concept as most people would never want it, much less need it.

But these care givers do. They do the research and the seminars, they do the schooling and the reading because it is what they want to do and it’s what they love to do.

When it’s not you…

For me, personally, when I really stop and think about it, I’m in awe. Because I know that I wouldn’t have the same patience level for other people’s children… especially if I didn’t already have an autistic child myself. I also know how I feel when I meet other parents that not only parent differently but do things I simply can not agree with, do things that are detrimental to their child’s development…. these care givers face that almost daily.

Care givers have to work with those parents, they have to deal with the non-verbal, aggressive, non-toilet trained children that are not their own and that have parents that either don’t understand, don’t know what to do, don’t care or… hopefully, do all the right things but simply need help.

And yes, I know you’re going to hate the “deal with” part of my last statement but remember, this is a care giver who loves those children. But it’s still something they have to deal with. It’s not their children, it’s not a life that was thrust on them.

I often write about how much patience I have thanks to my son, how we all become such better people thanks to our children and all of the wonderful things that having an autistic child can teach you…

But these care givers have more patience than I do… and they already knew all of those wonderful things before I did… it’s in them. It’s always been in them. They always were the better person that I’ve been working at becoming.

What’s in a voice?

I am very proud that woman spoke up and I am very happy she did too.

No, she is not autistic and not a parent with an autistic child, she’ll never “truly know” what it’s like to have Autism or a child with Autism… but that’s what makes her perspective an important one. One that I value.

Perhaps she will never blog about having Autism nor will she blog about what it’s like to raise an autistic child but when she does talk about Autism, in what ever form she does…. I’ll be sure to listen.

Because she came to us… and because she loves it. And without her and people like her, we wouldn’t have come as far as we have.

She sees children learn to speak, she sees children do amazing things! She works with them, she plays with them, she hurts when they get hurt and she celebrates their victories.

In conclusion

What I’m trying to say is, if you’re a care giver but feel it’s not your place to give any input or an opinion… I’ll listen to you.

Even if we end up disagreeing on something, I’ll listen to you.

Chances are though, I’ll likely learn something and I’d hate to miss it.

About Stuart Duncan

My name is Stuart Duncan, creator of My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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7 Responses to Recognition for the caregivers in the Autism community

  1. Angel G September 27, 2011 at 1:19 pm #

    I feel that awe when it comes to my sons’ teachers, EAs and therapists. They are instrumental in shaping our childrens’ futures and without them, it would have been a harder road to travel.

  2. Jenny September 27, 2011 at 1:24 pm #

    Good points, Stuart! I was just thinking last night about one such woman (Do you know Jean Nicol?) from Canada who does an amazing amount for autism awareness, and to my knowledge she does not have any children on the spectrum. Glad Jim shared this!

  3. Christine Zorn September 27, 2011 at 3:47 pm #

    This is a great post Stuart! I can think of many people (mostly teachers and therapists) who are not disabled and do not have disabled children who go above and beyond for our local autism and disability communities. I’d hate to think that they feel like they don’t have a voice, because they have so much to contribute!

  4. Jim W September 28, 2011 at 9:49 am #

    My family has been blessed with good caregivers for a while now. Even when there are some marginal ones, there are always a few that make up for it.

    As for the discussion of who is, and who is not “part of” the autism community. I think anyone willing to research it, help with it, contribute to it, “deal” with it, is “part” of it.

  5. Luvmyboys September 29, 2011 at 2:00 am #

    Its funny this topic was just on my mind. The ppl u r talking about -professionals working in the autism field- have CHOSEN to dedicate their lives to helping our children. They r some of my fave ppl. Im still in touch w my sons very first SpT he had for EI 4 yrs ago. She loves to hear how he’s doing & continues to be proud of him. Thru the yrs since my son started this journey he’s had 4 teachers, 8 aides, 2 assistants, 6 speech therapists, 3 OT’s, & several spec ed coordinators amongst other staff. Every single one of these ppl LOVED my son almost as much as we do. And each & every one of them is on my son’s team& contributing to his success. I cry when i hug them at the end of every schl yr. They are amazing, hardworkin, selfless ppl. They do everything! My mom said it best once. We were contemplating their xmas gifts 1 yr…. “They derserve special & valuable gifts as a token of our appreciation, they work so hard w him, they love him, they wipe his friggin ass for gods sake! And they DONT get paid enough!!!” We give each of them $100 gift cards for xmas&end of yr & i always make my son create something spec like a card/pic/book (homeade from the heart w love). And u know what? They def like the money but most of them have a bigger reaction to the kid-created, meaningful, heart warming gift & they appreciate that more than anything! Look im a teacher myself. But spec ed teachers r in a diff ballpark. Their level of patience, tolerance & compassion for our kids is remarkable.They truly are heaven sent angels & there’s nothing in this world that I am more grateful for…bc my son would not be where he is today without them.

  6. Dean March 7, 2012 at 10:09 pm #

    Nurses in charge of autistic patients in hospitals get about 40 bucks an hour so they get paid plenty, and usually, an aide from group home will attend the autistic patient, so the hospital is getting paid while not even watching the patient. This must change.

  7. Invitation Accepted February 27, 2013 at 1:57 am #

    Thank you for this! I am a 5 year caregiver/nanny to two boys with autism (now 5 & 7). It has been a major highlight of my life, as well as a major source of frustration. I have felt so close to autism, and yet so “left out” I am with them and they with me for more time than anyone in their lives with the exception of their mother. (single mom as of 2-3 years ago) Yet in my experience even long distance relatives have more “rights” to autism and more recognition. It is also hard to play such a huge part in their lives and go through such unique experiences when everyone in my “circle” has no grasp or understanding of the “lifestyle”. I cant share and discuss with anyone aside from their family. Autism is a huge part of my life. Reading this was super helpful and refreshing! Every part feels as though it was written to me, however silly that may seem. Thanks again

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