Who Should I Tell That My Son Has Autism?

When I started this blog on January 21st of this year, I had some lofty goals.  I was going to change the world.  I’d write about my son’s condition and people would listen.  They would learn about autism.  They would change the way they perceived autistic children and their parents.  People would come and read and pass on the story and the word could be spread, little by little.  Still my goal.  It’s just going to take some time.

And so for 24 days so far, I have torn off a tiny, little bit of my life with my son here and exposed it for what it’s worth.  I’ve opened this forum to others to tell you about it. When I started this blog, some people knew about my son’s diagnosis and some did not.

We received the diagnosis in April 2010, so it had been nine months since we were pronounced an “autistic” family when I opened the door to my life and let everyone in.  Funny thing about opening that door.  Not everyone came in.  Everyone has reacted differently.

Some of the reactions have been amazingly strong and supportive.  Some have been lukewarm.  Some of them took a long time to come forward.  Some people who used to freely converse with me have now come to completely ignore and avoid me.

My husband and I were initially frightened by the diagnosis.  We did not understand what the diagnosis meant for our son’s future, let alone what autism really was.  Our journey to getting the diagnosis was just the first step toward an understanding of where life was taking us.  We were not ready to let others travel this road with us.

We did not tell any immediate family members of the diagnosis when we first received it.  We were busy processing it ourselves.  None of our immediate family (aside from my parents) live closer than 100 miles away. We did not want them to be confused or upset by the news.  We did not tell our parents who are in their late 70s.  We did not want to burden them with worry over their only grandson.  There is also our concern over whether they can comprehend the diagnosis.  Even if they are completely understanding, the issue of elderly parents spending time worrying about their grandson keeps both my husband and I from openly sharing this information.

As time has passed, we have loosened our reigns on this information. First, out of necessity.  I had this huge new change to my life and it was starting to consume my time.  I could not work like I used to because I had appointments for evaluations and tests, therapies, and school district meetings.  Explanations had to be made.  Different people started showing up and spending time with my son.  Their presence had to be explained and acknowledged.   These were the first disclosures.

The rest of the disclosures came little by little.  First, with friends who spent time with my son or me.  Then, we told acquaintances we see on a regular basis, such as the coffee shop where I get tea every day of my life.  These were relatively easy disclosures.  And surprisingly, supportive and non-judgmental.  Most of these people start their responses with telling me they know people who have children with autism.  Autism is far more common than you would think.  1 in 110 children on average is diagnosed with autism, greater in males, at 1 in 70.

I don’t think there has been a parent who hasn’t wondered about who and how to tell strangers or people otherwise on the periphery of life about the diagnosis.  I’m no different.  I wonder whether I am doing the right thing saying something or not.  Some of the more uncomfortable disclosures have come when I wanted to sign him up for classes. I had to tell complete strangers that I would need an aide in the class because my son has autism.  That was not easy.  The people at the gym class have been wonderful, open and welcoming.  Again, they already had experience with an ASD child.

The whole question of who to tell or not to tell has nothing to do with shame.  It has to do with reactions.  Some people react with enormous support and understanding.  But, my disclosure has also yielded me reactions of ignorance, anger, shunning and indifference.  All of this can hurt my son, a child who is already struggling with differences that are elusive and consuming.  Sometimes, we just don’t want people to know but we have to tell them so they can accommodate our child’s disability for any number of reasons.  And to protect my son, we question who we will tell.

Still, despite all the supportive responses I have received, especially from one person, I still have received judgmental denials of my son’s diagnosis as well.  These people may have thought they were helping me my saying that my son is fine and the doctors don’t know what they are talking about. (Yes, this happened).  I have been told that my son just needs to be in school, with other kids and he will be fine.  The people telling me this mean well but they simply do not understand that my son really has a disorder that originates in his brain.  A neurological disorder.  Yes, with strong early intensive behavioral therapy, when young enough, signals in the brain have a chance of getting re-routed so he can attend regular school and blend with the other kids.  That’s a chance.  I have to live with the reality.

I don’t want pity.  I don’t want denial.  I want my friends to be my friends, to listen and to talk to me about it once in a while.   Is that asking too much?  Sometimes, I feel like people have the wrong idea that I’m trying to raise money or that I’m complaining that I have a hard life or that I’m preaching.  None of those things is true.

I don’t have a hard life.  I don’t want to raise money and I don’t want to convert anyone to advocate for autism.  I am sharing my life with my son just to share an understanding of one mother’s perspective of living with this disability.  To give an awareness of what autism is really like and how our days are affected.

Someday, someone you know may tell you they think their child is not developing normally.  They may tell you some of the symptoms that you have recognized me talking about here.  You may be told by someone that he/she has just found out their child or their loved one is one of the statistics.  And then, just maybe, empowered by knowledge, you’ll know just what to say.  And that someone will thank you.  And so do I.


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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17 Responses to Who Should I Tell That My Son Has Autism?

  1. Beautiful post, Karen – and so spot on for any parent of a child with a disability. You’ve said so well here what I feel every day. Bravo to you!

    • solodialogue says:

      Thank you Karla! I ponder every day whether I should tell someone or not. I know for some people, this is not an issue because the condition is profound. But for those of us who are on the border or the other end of the spectrum, like me, it is a question that I must consider in my son’s best interest every day.

  2. Tracy says:

    Bravo Karen. Autism is a diagnosis, not a disease, not cancer, I’m not always so sure a disability, it’s just a different way of looking at things as far as I am concerned. Great post, I look forward to more.

    • solodialogue says:

      Thanks for your comment, Tracy. I find autism to be a disability, because of the neurological basis from which it arises. I think whether you use that term or not is simply is a matter of perspective and focus. I welcome you here! Please come back and read again.

  3. Nancy G says:

    Not sure autism is a disability?? You might want to check this out http://www.youtube.com/user/CDFoakley

  4. Nidia says:

    Love it! I have lost many friendships, and have gain new ones with wonderful parents who are also dealing with ASD. It can be tough, but I have a new meaning to my life.

  5. Kelly says:

    Great post. Our first autism anniversary is coming up next month, and we, too, have struggled who to tell and who not to tell. Should we tell the neighbors who hear my sons’ screams all too often? Should we tell extended family that we rarely see? What about our older daughter’s friends when they notice our sons’ “quirks” or delays? Those are tough calls to make, and we don’t always make the right decision.

    I really enjoy reading others’ thoughts on these types of questions. Thanks!

    • solodialogue says:

      Thanks Kelly! So glad you came by to read! (Btw, I love your blog!) I guess I’m just grateful that I do struggle with this question given where my son is on the spectrum. When you make the choice it can be a real awkward conversation or a great bonding one. Depends on who you talk to, I guess. 🙂

  6. spectrumdeb says:

    Your post sounded amazingly similar to the challenges, fears, and considerations people I know faced in coming out as a gay or lesbian. I was struck over and over at the exact word choice, imagery, and thought processes involved in coming out. We risk the loss or distancing of every one of our relationships each and every time we tell our truth. This disclosure process we parents go through to fit our ASD families into the larger picture of our neighborhoods, our culture, our extended families is wearying.

    It is sometimes annoying to feel like the designated “Autism Ambassador” from Planet Spectrum. Although gayness is no longer a diagnosis, I am encouraged that over time, our gay and lesbian neighbors have become an integrated facet of our human cultural experience. Maybe that model will be a template for families like ours. Voices like yours, mine, and the authors of the previous contents will make our families visible. Visibility ends silence and begins the conversation.

    • solodialogue says:

      I’ve thought of that analogy before – how actually saying out loud that our children are on the spectrum might be like “coming out” in the gay and lesbian community. I am not familiar enough with the challenges the gay community faces with coming out- on a personal level so I do not feel it is my place to make that analogy but I am grateful that you said it. In my opinion, there is a segment of the poplulation that definitely provides a “stigma” to announcing differences in a very sadly un-accepting way, no matter what the difference. Your last sentence is a quote and I’m tweeting it with reference, of course! “Visibility ends silence and begins the conversation.” Love it!

  7. Melissa says:

    I used to struggle a whole lot more with who to tell. I sort of fell off the planet for a while after her diagnosis. I didn’t have the energy for dealing with friends or family who hadn’t been in the loop since the beginning… because it was all just so much. We were sort of like you, except it was more like, if we spoke to you on a regular basis or saw you regularly… there was a good chance I would have told you… but neither my husband nor I went out of our way to MAKE calls. At the time, that felt sort of awkward. Also, there were people (friends with babies…) who I just couldn’t talk to.

    Cut to a year-and-a-half after services started and 1 year after diagnosis. We’re freer with some information now. My daughter has made a lot of progress… BUT as she develops, the gap between she and her peers becomes clearer. (sense?) We, like you, get a range of responses from incredibly supportive, to those who mean to be supportive, to those I cannot tolerate. Really. Example: “I think by 8 or 10 years old they all level out, with our without services… Maybe she’ll just snap out of it” or when telling a family member about current happenings,”That’s SO typical….. (insert rest of stupid comment here)” and goes on to give me about 10 or so suggestions on how to handle her ongoing education. This really just serves to tire me out a little more and make me incredibly angry. You?

    • solodialogue says:

      I understand. It’s hard just to process what is happening yourself before even considering how to handle others but, of course, it all gets into a jumble of thoughts that run through your head. Yes, it gives me that hollow feeling in the pit of my stomach when I see that gap sometimes. There are so many ignorant responses. Truly borne of nothing more than the fact that people simply don’t know and don’t understand. It does really make me angry sometimes but at some points you have to either ignore it or channel that anger to trying to do something creative to provide awareness. ( I do have my own personal rants and tirades in my own space, of course…) Thanks for commenting and coming by!

  8. Sue says:

    Hi there sister,
    I call you this because we walk the same path; just different stages. We are on the road to recovery. I was feeling pretty down and your blog just affirmed me. I am not asking for more than a listening ear and understanding of what struggles I go through. It is not asking for a lot. However, I agree that no everyone would like to be educated and friends, family and even doctors are not tolerant of ASD. For this reason, I believe we are chosen for this mission in life. No other parent could love their children more than we do to expose ourselves, or open up our homes to everyone so to give our guys and gals a chance at life. They are part of the community whether the community accepts them or not. It certainly takes a whole village to raise a child so good for you. Keep it up. Please continue to write. I enjoy your entries. — Best, Sue

  9. Donna says:

    We were recently diagnosed as an autistic family and my emotions are all over the place. So glad I found your blog to know that others are struggling with their feelings, emotions and reactions just as I am.

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