Tuesday, October 6, 2015

Walk Away

I have a fourteen-year-old son with autism and I am very active in the online autism community. The question has been asked of me more than once lately: If you meet a small child who is showing signs of autism, should you tell the parents of the child that you suspect he might have autism? There are a couple of things to consider for sure. How well do you know these people? And how sure are you that your input will be welcome? Unless the parents are folks you know very well and they have asked for your input, you might want to consider biting your tongue and walking away. And honestly, even if you know the parents extremely well you should consider just walking away with lips tightly sealed. Does my answer surprise you?

It is not the answer I would have given ten years ago when I first entered the autism community. Back then I wanted to share my newfound knowledge with as many people as possible. It is the answer I give now though because of the experiences I have had. I have lived and learned. Yes, I am aware that early intervention is the key. Yes, I am aware that many people do not even know what the signs of autism are. Yes, I am aware that a young parent of a first child might have nothing to compare their child’s development to and need some guidance. But I am also aware of a few other things. The shock and disbelief you will probably encounter from a parent when you suggest something may be “wrong” with their child will build a wall between you and them that cannot be knocked down easily. That wall could keep them from coming to you later for advice when they are ready to seek help. Offering unsolicited advice or even a suggestion about seeking a diagnosis might do irreparable damage to the relationship you once had.

If you find yourself wanting to offer unsolicited advice to parents you do not know very well think about this: You probably do not have enough information to make any credible suggestions. Perhaps they already have a diagnosis or a similar diagnosis. Perhaps they do not want one. Perhaps it is none of your business. I did not think about these things when my son was newly diagnosed and I found myself wanting to enlighten those around me. I found very quickly that most people want to keep their feet firmly planted in denial as long as possible. There is something to be said about the bliss of ignorance. I myself often long for the days before I knew what autism is. I was one of those parents who would not have appreciated someone else trying to tell me about autism before I was sure I needed to seek a diagnosis. For a while I forgot that about myself, or maybe I just did not consider how others might feel similarly.

Put yourself in the shoes of the other parent (or maybe you have actually been there already). Have you ever had anyone walk up to you and suggest they know something about your child that you yourself do not know? A parent can go from friendly to defensive, or even furious, in a heartbeat. Would you walk up to a parent at their kid’s ballgame and suggest their kid needs to spend some additional time practicing at the batting cages? It probably would not be met with a friendly attitude. Would you offer parenting advice to parents in the grocery store because their child is misbehaving? I would not recommend it. Would you ask the parent of a child who is limping or stuttering what kind of therapies and doctors they had been to about their child’s “disability?” I can imagine the parent would not appreciate it.

I would make a few exceptions to my rule for not interfering. If the child in question were a relative I would mostly likely offer the parents some literature to read and try to have a conversation with them about early intervention or the signs of autism. If they were not receptive then I would not push. Probably nothing good would come of it. Of course most of my relatives are very educated about autism already because they are a part of Tate's life. 

It is hard. It is hard to see the signs of autism in a child, know what needs to be done to help, that early intervention is the key and time is ticking, and know you have so much knowledge you could impart, and still walk away. It is harder for some of us than others. When you are introduced to autism, you begin to see it all around you: the awkward gait, the lack of eye contact, scripting, inappropriate play, repetitive behaviors and social delays. I have to remind myself often, although I know what autism looks like, I am just a mom of a child with autism. I am not a doctor. I am not qualified to diagnose autism. I also have not been invited to give my two cents. And I walk away.

Tate and Sydney, age 3 and 1
If you do find yourself a part of a child’s life after the diagnosis of autism, a child you suspected had autism before the parents sought a diagnosis, NEVER NEVER NEVER say to the parent, “I suspected that your child had autism.” This actually happened to me and has happened to others I have spoken with. There is the initial hurt of knowing others “knew” but did not tell you. For me, even after I came to realize I would not have been receptive had that friend come to me earlier than I was ready to hear the word “autism,” the hurt was still there. It was sort of “’I told you so’ only I didn’t tell you” and it was so humiliating and painful for me. If you find yourself a part of a child’s life after the diagnosis of autism, a child you suspected had autism before the parents sought a diagnosis, and you are tempted to say, “I knew something was wrong earlier than you did.” then think again. If you bit your tongue in the first place and never said anything then BITE YOUR TONGUE this time too.    

Note: I’m sure I will be hearing from people who tell me they disagree and they were very grateful for advice they received. How without the unsolicited advice of a neighbor, friend, relative, or stranger, they would never have gotten their child the help they needed. I realize I am not the authority on this subject and I realize there are people who do not become offended when someone offers them information about autism. However, I still believe that MOST people would rather not receive unsought contributions from others about their children’s well being. This is just my humble opinion. As hard as it is I try to bite my tongue and walk away.


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  2. As a mother of a 3 year old who was recently diagnosed with ASD I completely agree with your viewpoint. In talking with my mother last night she told me her sister (my aunt) knew "right away" that my son had autism but felt it wasn't her place to say anything. I'm sure I wasn't meant to be privy to that conversation and my aunt has been a special needs teacher for a couple decades. But that still does not make her eligible to diagnos my child. I became very defensive and after thinking about it overnight it is because I felt humiliated and guilty for not seeking help earlier when I had a fleeting thought that my child might not be developing typically. I just hope that the more I learn about Autism the more I can remember how I felt in this moment.
    Thank you for sharing. :)

  3. I've been following you for a bit now not because I personally have a child on the spectrum (officially....) But because of my little cousin. I was with him almost every day for his first year, from the time he was a month old. I knew he was different. I just felt it. Not a bad different, just different. But at sixteen it was hard for me to tell my aunt and uncle he was different. But I did. It caused a huge rift between us for a long time, and even now tho we have come back together it caused damage on relationships that were once very close. My cousin is now getting straight A's, has friends, and enjoys school. He still struggles daily but I'm proud of the boy he is. I encourage him from across the country, and remind him regularly that I love him even tho he barely knows who I am. (As I said, damage, and in this case I don't know if it can be repaired.) He will always have a very special place in my heart. Thank you for blogging your journey. It allows me to see that there is hope, and there are still good people around.

  4. Hi

    I have done some research into FAS and ASD and it seems that there are a lot of similarities. I was wondering since you have a child with FAS and a child with ASD if you could tell me what you have noticed as being similar as well as the differences that you have noticed between your children.