Sunday, May 7, 2017

How Did You Know and A Few Good Tools for Getting Help

"How did you know?"  This question is often asked by parents who have witnessed behaviors or missed milestones who aren't sure quite how to proceed in figuring out if their child needs more help, or even if they might land somewhere on the spectrum.

First let me share the tools that I've found helpful, and then I'll get into answering the question above a bit more thoroughly.

I am a big believer in parenting instincts when it comes to something being not quite right.  And over the years I've found a few websites that can be really helpful in helping parents sort out whether or not things are outside the range of normal, which is really quite a large range, although not so large that some of us don't find ourselves, or those we love quite outside of it.

The first website that I go to allows you to take a test called the ASQ, online.  The ASQ, or the Ages and Stages Questionnaire, can be extremely helpful when a child is missing key milestones.  I first took it for Patch when our pediatrician's office used it before each Well Child check.  I quickly realized that it was a very valuable tool.

In my experience it has been amazingly accurate at raising red flags when and where they need to be raised.  And the best thing about the ASQ Oregon site is that it tells you where there are delays and allows you to print out your results and take them to your doctor to say "look, I was worried so I filled this out and these are the results."

It helps me explain exactly what's going on in a way that is easy for my doctor to understand, and our pediatricians have always felt that that test is a solid indicator for sending the kids on to the correct testing with other therapists or specialists.

The second test is the MCHAT.

The ASQ can be given to babies.  The MCHAT is for toddlers who are at least 16 months old (the ASQ can be given to toddlers too).  When you take the MCHAT online, like the ASQ, the results will let you know if there are concerns and you can print the form and take them to your doctor.

Having red flags on the MCHAT doesn't mean your child has autism, but it is a good starting place to get answers.  Maggie had a ton of red flags and she is on the spectrum.  James had five (which alarmed his developmental pediatrician) and his therapist and doctors are extremely pleased with his social communication skills at this point and if his extreme articulation of every feeling he has is any indication I'd be rather surprised if he ends up being on the spectrum.

Those are my two favorite starting points, along with finding a good pediatrician, preferably one with experience in developmental delays.

It took us a long time to find a doctor that was good for Maggie.  At first we just went to the local pediatric clinic.  We quickly realized that this was too hit and miss.  On the one hand we met the doctor who told me "I am a hundred percent certain that your daughter is autistic" there.  She was amazing.  But once she moved on I had a doctor ask "what's OT?" when I was explaining the therapies Maggie was in and another tell me that nothing could be wrong with Maggie (who'd been running a fever for a month and a half) because she was too energetic.

We realized that we needed to find a doctor that understood autism, and who could see past the fact that Maggie could go from sleeping twenty two hours a day with a fever at home and not drinking any liquids for two days, to bouncing off the walls of a waiting room, because she has that sort of endurance when she's super stimulated.

The other starting point we've used is directly contacting our state's Early Intervention program.  With Patch, the doctor contacted them for us.  With James and Tessie we were already in contact with Early On (the Michigan program) because we had an older child in the program, and we made the referral ourselves (Tessie was actually spotted by three different therapists who suggested that I make the referral because she was so unresponsive when she was 1-6 months old).

Early intervention can be huge.  Honestly I would rather take the chance of being overly concerned and be told that everything is fine, then miss a problem and have to deal with more therapy later on.

In a few months James will be graduating from all forms of therapy.  He's been doing PT since he was seven months old (he couldn't prop sit on his own at ten months).  And I credit the hard work from his early interventionists with the fact that I'm going to have far less appointments in the future than I would have if we'd "waited to see" what was going to happen.

He's worked really hard to get where he is and it shows.

Hopefully you'll never have to use any of these resources, but if you do it's good to know where they are.

As to "how did you know?"  That's trickier.  I didn't for a long time. I thought that we had late talkers.  Maggie made eye contact with me constantly.  She didn't maintain eye contact, but she made it.

For us the symptoms were specific, but I seldom see her when I see those "what to look for" lists.  She liked spicy foods and strong flavors.  She didn't appear to feel pain, especially when she was really hurt, and her responses to pain were inappropriate.  When she was struck by a kid swinging and thrown about ten feet, she jumped up, giggling.  She was very cuddly, but she always wanted her skin covered, usually in a sleeper, because light touch hurt.  She wanted to be held and squeezed tightly.  She never stopped moving.  She broke everything, usually without meaning to.  She was incredibly strong and incredibly coordinated.  She made high pitched squealing sounds.  She guided my hand to get things she wanted, and to point to things (once she got older).

She never rocked or flapped.  She was incredibly cheerful and happy most of the time.  She pointed.  She made noises to get my attention.  She played with other children.  And she always noticed if someone else was upset and would come over and try to cheer us up.

Perhaps the biggest red flat though, was that she "had no tether" as James' therapist calls the thing that keeps him near me when we're out.

When I'm out walking with James I rarely have to worry about him going far from me, because I know that he will stay right next to me if he's out of his stroller.  Usually he'll say "Hold hands!  Hold hands PLEASE!" if I'm not holding his hand.

It is amazing to me, and fantastic.

Maggie on the other hand, had no tether from the start.  Once she was old enough to crawl she was crawling away without looking back.  And once she could run?  We were constantly chasing her down, making sure she didn't sprint into traffic.  It was terrifying.

I'm not sure my answer to "how did you know" is all the helpful because the saying "if you know one person with autism, you know one person with autism" is so incredibly true.

And that is basically the guide to the tools that I use when I have questions and the answer to the question of how we knew, or really, all the things we missed for quite some time until her pediatrician pointed it out.

In Tessie's case, being able to use these tools to express what was going on is what got her sent to the neurologist that ultimately realized that we weren't looking at a developmental delay (at least on its own) but that there was an underlying medical problem for her missed milestones, leading him to find the central apnea that had her so exhausted she had no energy for anything else.  And if the number of times her monitor have sounded telling us she isn't breathing are any indication, that may well have saved her life several times over.

If you have any questions I can try to answer them, and if I can't there are usually other people in the  comment section with invaluable knowledge that can!

All of the photos in this post are of Maggie.  I used them because one thing I commonly hear is that if a child is happy and looking at a camera they obviously aren't autistic.  That has never been our experience.  Maggie was a challenging toddler, yes, but she was always extremely happy.  And in my experience many kids on the spectrum are pretty curious about electronic devices.  Looking at my phone that I'm taking a picture of her with is very likely to happen, possibly because she's plotting how to swipe it to watch Bubble Guppies and look at pictures of mermaids.


  1. You wrote: "I am a big believer in parenting instincts when it comes to something being not quite right." I want to shout YES YES YES from the rooftops. Yes, believe your instincts. I knew from the time my daughter was an infant that something was off. I told doctors, therapists, etc. and was told she had some quirks. Even with years of unbelievable problems with her, including eating problems with her that resulted in hospitalizations but definitely were not anorexia nervosa... FINALLLY after the last hospital stay of 3 months in a mental hospital, a friend suggested a certain psychologist that specialized in eating disorders AND accepted insurance. This woman, God bless her, in the first 15 minutes of my daughter's appointment, asked about the results of her neuropsychological testing. I was lost, didn't know what she was talking about. Apparently the history was enough to scream autism spectrum, and no other professional had brought it up. NONE. Long story short - my daughter did the testing and was diagnosed as on the spectrum. The doctor that tested her said that it used to be people didn't think girls could have autism, and since she is high-functioning it was missed. High functioning... yet screaming and sobbing to not go to school, severe anxiety issues, starving herself because of anxiety, etc. but no one caught it. I suspected Asperger's a few years ago and was laughed at. When I think of how much better things would have been for all of us if we simply knew what was going on and had been able to give her the correct therapy.... I just want to cry, scream and bang my head on the wall. So far, with the change in how they are approaching her therapy, things are coming along, although she still has a long ways to go. It is hard, other 18 year olds are driving, talking about college, having a part-time job, and she isn't ready to handle any of that, not when her anxiety overwhelms her. Well, I'll stop rambling. This subject hits such a sore nerve after the nightmare of the last few years because we didn't know what was wrong and no one waned to believe me. I had even started thinking that maybe I was the one with a problem, looking for things wrong with her.

  2. So I took the ASQ for our youngest. At her last well child the pediatrician asked if she was saying at least 20 different words and when I started thinking about it I realized she is not even close. When I read the questions on the communication portion of the ASQ I got sick to my stomach. She got 2 sometimes and 4 not yets. Thank you for sharing this as it made me realize I need to make a point of giving her some focused attention and not just assume she is picking everything up for her big sisters!

  3. Just as add on to my previous comment - my daughter, now 18 and officially diagnosed as on the spectrum - had NO TETHER either. Any where. That resulted in my heart stopping a few times as she was incredibly quick. And... she is now 18 and still isn't very good at stopping herself from doing things that are ... shall we say.. not in her best interest.

  4. Knowing in my gut that something was wrong is what took us to the psy who diagnosed my daugther's mental illnesses. Everybody else's opinion was that her behavioral issues were our poor parenting. She was just "spoiled" and needed "consecuences". We work hard at our parenting and I knew something else was in play. Also, in the lines of better to waste dr's time than to not catch something, when I gave birth to my first child, I met a woman who had gone to the ER because her baby had been calm that previous night. He usually moved a lot at night. They did an ultrasound and found the cord was choking him. She was almost at term, so they did a C section and saved his live. She told me her mom told her not to go to the ER because "she'd be laughted at". But she went with her gut and saved his son.

  5. Hello
    I just found your blog and what you describe about your Tessie sounds so familiar to my youngest child. She is 16 months old and has central apnea. She stopped breathing when she was two days old and turned blue. She has been on a monitor during sleep ever since, but sometimes has more alarms than other times. Mainly when she is sick (aka has a cold) she doesn't have any alarms but when she is perfectly well she has many, and I think it is because when her nose is stopped up she doesn't sleep as soundly, and doesn't have apnea episodes. Doctors still don't know what is wrong with her. We are waiting for the results of the PHOX2B mutation testing. Did they decide to test your daughter for that ?
    I will definitely be checking your blog to see if you find out what causes your daughter's apnea.

    1. Hi Rebecca,

      The genetics company volunteered to pay for the testing after our insurance refused to cover it, so we just sent the sample in next week. I heard from the company doing the testing yesterday and they're expecting to have results around the 16th of June.

      And welcome to my blog! It's not as active as it used to be because things have been so hectic, but I love how it's made it possible to connect with people in similar situations I never would have had the opportunity to "meet." That must have been so frightening when your daughter turned blue! Tessie has stopped for long-ish periods of time but I've never seen her change colors, although with some of the oxygen numbers she's had that might be because the room was too dark and I just didn't notice before we realized how serious things were. Nice to meet you!


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