Just another Minnesota Mom blog.

Support, not Silence.

Posted: April 5th, 2013 | Author: | Filed under: Autism | Tags: Autism, Autism, Autism Awareness Month, Early Evaluation, Support Groups | 13 Comments »

Twitter november 2011

1 in 88.

1 in 54.

1 in 50.

These are the numbers that have swirled around the Autism community for the past year or so.  That 1 in 54 is important to me because it most closely represents us- 1 in 54 boys will be diagnosed with Autism.  At least that is the finding from a study of 8-year-olds in 2008.

That 1 in 50?  That is from the most recent study.

1 in 50 kids has autism, according to a 2012 study.  Of course, this study, along with all of the other studies, has it’s detractors.  But really, 1 in 50 doesn’t seem too out of the ballpark to me.

So, what can you do?

Well, for one, if you have an infant or a toddler, and you have a nagging feeling that something is up- even if it’s “just” a speech delay…do me a favor and call Early Intervention.

If you have a friend who is worried about their child- let’s say he isn’t acquiring language at the same rate of his peers. (I’m using language because it’s usually the thing that triggers and evaluation, yet most people blow it off.)
Please, do NOT say any of these things:

– Boys talk later than girls
– He has an older sibling/ twin who communicates for him, it’s OK
– You always meet his needs for him, he doesn’t *need* to talk
– He was premature, he will talk later
– My cousin’s uncle didn’t talk until he was 4 and now he’s a lawyer…

Instead, LISTEN.  I have a son who was a late talker and I have twins who lost language and became non-verbal.  The gut feeling was completely different.  The fear and worry was different.  I knew pretty quickly that something was not right with the twins, and I didn’t worry at all with my youngest.  It’s different.

If you have been in this place of worry, if you have ever called Early Intervention, if you have ever had a child diagnosed with Autism or another special need- please, SHARE your resources.  Support a mom or dad when they have worries, do not blow them off.  You should be their first shoulder to lean on, you have been in their shoes!

It is a really isolating place to be when the mothers around you abandon you in your greatest time of need.  Telling someone not to worry is the equivalent of telling a mom to sit down and shut up.  Sometimes things are not OK.  Sometimes things warrant a professional opinion.

Why are we so quick to tell moms that everything is fine?  Is it because we are afraid we are missing something with our own kids?  Is it because their fear is also our fear and we desperately don’t want to peek behind the curtain and deal with what might be waiting for us?

Don’t wait.  Don’t tell others to wait.  Resources are available and completely irreplaceable.  You do not want to “wait it out”- waiting is just wasting time.  The only thing we have in this fight is early intervention, the key word being EARLY.

And one more thing- if there is a mom you know who is taking steps to figure out what is going on with her child, don’t tell her that she should stop looking.  Don’t tell her that she can instead fix her child with oils (or herbs, diet, a warm bath before bedtime and spinning around 6 times upon waking up in the morning)- it only serves to prolong the inevitable, which in some cases takes away free and affordable supports.

This isn’t going away.


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13 Comments on “Support, not Silence.”

  1. 1 Catherine S said at 12:37 pm on April 5th, 2013:

    YES! This!!! Thank you. Sharing this everywhere now.

  2. 2 erinclot said at 1:33 pm on April 13th, 2013:

    Thank you so much for sharing!

  3. 3 motherofwonder said at 1:05 pm on April 5th, 2013:

    amen!! I can't stand it when someone voices a concern and everyone starts in on the "my kid did this/I know someone who did that… and they're perfectly normal." The bottom line should be, find out! but know that everything's ok no matter what you find out!

  4. 4 erinclot said at 10:24 pm on April 12th, 2013:

    Exactly! My kids are still OK, they just need some extra help. There is nothing wrong with getting help.

  5. 5 Beth said at 3:03 pm on April 5th, 2013:

    I learned this from you. The right answer if someone is worried should be 'can I help you research what options are available?'.

    Coming from the perspective of only having typical kids, when I did try to say something reassuring or share a story of someone having a similar issue who turned out fine, it wasn't an attempt to dismiss the concern, it is just my instinct to want to be comforting. It never occurred to me until you pointed it out that it makes someone feel invalid and not supported.

    I'm glad you write things like this and that you speak up! I will (probably) never know what it is to be in your shoes, but it is nice having someone to bring up the right ways to approach these situations.

  6. 6 erinclot said at 10:16 pm on April 12th, 2013:

    I completely understand that it's a way we try to care for each other as mothers. I do. And I do appreciate that. I just wish there was a way to make sharing resources or validating concerns part of how we care for each other. If that makes sense. It all comes down to the stigma of something being "wrong". When there is something "wrong", we all get very uncomfortable.

  7. 7 valerie said at 3:21 pm on April 5th, 2013:

    THANK YOU. i am a behavioral therapist. if a child is just a "late" talker services won't hurt. i also have a 4.5 year old. he is barely talking. his preschool teacher is always very negative about him having other services. and has expressed she disagrees with his autism diagnosis. its incredibly frustrating to me. why would you not encourage as many services as possible. i could talk for hours on this subject… you said it much nicer than i would.

  8. 8 erinclot said at 10:22 pm on April 12th, 2013:

    I think I would go crazy if I worked in your profession and had to deal with that. I wonder if she's not encouraging services because of budgetary reasons? Not that that makes it OK. You would think she would welcome anything that might make her job easier!

  9. 9 mommasylvia said at 9:20 pm on April 6th, 2013:

    Great post! Great info!!
    I'm remembering back 21 years ago when my son was not walking yet a t 2 and we were told that he was just afraid to, 19 years ago when he was not talking or toilet trained at 4 and we were told he was just a late bloomer. Mostly everyone refused to acknowledge the truth. All we wanted was someone to acknowledge that they saw what we saw- something not quite right. Sensory issues, weird obsessions etc. etc. you know what I'm talking about. Finally when he was 15 he was diagnosed with autism! 15!!!!! When my daughter had brain cancer and then later all the signs of autism we were taken seriously Thank God

  10. 10 erinclot said at 10:19 pm on April 12th, 2013:

    It's so crazy to think that 21 years later, with Autism rates where they are, that we are *still* hearing/ saying things like "late bloomer"! I'm glad you were eventually taken seriously, that had to be incredibly frustrating for all of you.

  11. 11 Alex@LateEnough said at 6:03 pm on April 8th, 2013:

    I can't stand how quick people are to tell others "oh it's normal" — even after a diagnosis. It's so belittling and unhelpful. I always tell people that it's better to check it out too.
    My recent post I Need An American Horror Story Bodyguard

  12. 12 erinclot said at 10:21 pm on April 12th, 2013:

    Our pediatrician tried to blow off our diagnosis…we got a new one. Thanks for advocating for getting kids looked at, one mom at a time!

  13. 13 erinclot said at 10:13 pm on April 12th, 2013:

    My apologies to everyone- I forgot I had my comments sent to "pending" after a lot of spam comments a few weeks ago. I just noticed you all quietly sitting in my cue! Thank you so much for sharing and personal insights, I truly appreciate it.

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