Friday, March 25, 2016

Overdue Update

In October my good friend babysat all three kids for me for several hours. When I went to pick them up from her house she asked me to stay for a minute and talk. She had been doing some random reading the night before about signs of autism in toddlers and she thought she saw some of the things mentioned in Lady Bug. She shared a link to the Modified Checklist for Autism in Toddlers, Revised (also known as the M-CHAT) and suggested I try the checklist and see what it said.

I knew that Lady Bug wasn't talking as well as she was earlier in the year. (She was meeting 2 year speech milestones at 14 months.) I figured that was my fault ; my PTSD triggers move from out of state to two miles away on the same day I had painful oral surgery that had me in bed for a week. I got deeply depressed and stopped talking and interacting beyond the necessities myself. It was a hard summer on all of us; surely she was just responding to that? The poking of her side of the face and ear that she was doing; she probably just had clogged ear ducts and was trying to relieve pressure.(Checked with pediatrician, no ear infection.) All of my friend's "signs" all seemed to have alternative explanations. But then she shared an almost 10 minute video that she took of her trying to get Lady Bug (who knew her well) to play or interact with her. It was heartbreaking and eye opening. I did the M-Chat; the result was "high risk for autism; see doctor ASAP."

I wrote a post about the journey seeking a diagnosis and about the roller-coaster of emotions; this is not that post. I wrote that post on paper and have misplaced it in the move (but as soon as I find it I'll post it!.) Oh, yeah, we moved again. But at least this time we're home owners! We looked for a house and bought one and moved it all between being referred for an assessment and her actual assessment. 5 months. That's how long we had to live in limbo. But we finally got a diagnosis last week. She "presented with behaviors consistent with moderate to severe Autism" along with a speech delay and a global developmental delay. (She did not test well due to lack of interaction with the testers.) We're also seeking a Sensory Processing Disorder diagnosis (she's a sensory seeker), but that has to be given by an Occupational Therapist.

April is Autism Awareness Month; or April 2nd is World Autism Awareness Day. (I've been seeing conflicting info on this.) I have been going through these past five months being glad that there is such an awareness of what Autism is and is not and the destigmatization of it in the past five years or so. And then I realized that just because I had become more aware of it in the past few years does not mean that all others/society had been going through the same learning process I have. Maybe I've just been hanging out with and facebooking with people who share information about Autism, but that's not necessarily representative of the whole of society. So what can I add to Autism Awareness? I just started this! I'm still barely learning about what this means for my daughter and my family. But already I've encountered some attitudes and comments that, in my raw/new to this state, have come off as frustrating or hurtful. So, if you do not have a child with Autism, but you encounter someone who does, please keep these in mind?

1) If you've met one kid with Autism, you've met one kid with Autism. Autism is a broad spectrum with such a wide range of severity and behaviors. Please don't think that just because something worked for some other Autistic kid that you know that it will automatically help us.

2) If you don't have a child with Autism and you're not a specialist who works with Autistic kids, please, just keep any advice to yourself unless I specifically ask. It's such a different brain wiring that what you think works for your kids isn't likely going to translate well to mine. It's like a non-parent trying to give unsolicited parenting advice to parent with several kids. 

3) Trying to "reassure" me that this is something she'll grow out of/ nothing to worry about/ all kids her age do X does not reassure me. It comes off to me as dismissive of a very real condition that needs to be seriously addressed. Minimizing my daughter's symptoms makes me think you're thinking I'm blowing things out of proportion and makes me not want to share with you because clearly you think I'm just overreacting.

4)"Everybody is on the spectrum." What does that actually mean to you, lady at the art museum? Maybe you meant to be comforting and inclusive. I wish I'd asked. Instead I was too busy running after my sensory seeker to stop her from trying to eat paint to ask you to clarify. But in the newness of the complete reordering of our world, along with your tone of voice and body language, it felt dismissive. Maybe I'm extra sensitive right now. Maybe we should assume that of all the parents who you've only just met and be a bit less generalizing.

5) "I hope you won't let this diagnosis restrict her potential." Seriously?! I did ask for clarification on what that meant to the person who said that. Her view was parents getting Autism diagnosis and assuming that their children would never learn anything so never trying to teach them, or in the WAY BACK PAST parents getting a mental handicap diagnosis and shutting them up in the attic or sending them away for the rest of their lives in an institution. Seriously; she thought that my daughter being diagnosed with Autism meant that I might not try to help my daughter learn or think she has the potential to do more than maybe someday pass 8th grade. Um, no, that's not how any of this works anymore. And thanks for thinking it's a possibility that I'm the kind of parent that would give up on her child. /sarcasm 

6) If you've met one parent of an Autistic kid, you've met one parent of an Autistic kid. Not all parents are going to be as sensitive as I am right now. Hopefully in a year or so from now I won't be as sensitive as I am right now. But the world could use more kindness and gentleness. If you feel like you should say something but are worried how it will be taken, maybe just try "is there anything I can do or say that would help?" 

I know so much more about Autism now than I did before my daughter was suspected to be on the spectrum. I know so much less right now than I likely will a year/5 years/10 years from now. I hope that before all this happened I wasn't saying stupid stuff to parents of kids that I had no real knowledge about. If I did say something thoughtless, I am so sorry. I hope I can extend grace to those who don't realize what their comments sound like. And I hope that if you read this, if you find yourself talking to a parent of an autistic kid that maybe you'll remember that what you mean to say may not come out the way you mean it.

Thank you.


  1. I have so many times run into comments such as these. It's incredibly frustrating. We're about to start another round of evals as it seems there's something more going on. I've even had family members who said it was a discipline issue (needless to say, we don't see them often because that's just the tip of the iceberg).

    The journey is hard, but amazing. You got this.

    1. Thank you! I've had a family member who acted like they thought it was a discipline problem. That won't be allowed to happen again. <3

  2. {{{{hugs}}}}

    It really does get easier over time. Not that there won't still be rough days (helping a child with ASD is a "two steps forward, one step back" kind of thing) but you'll adjust to your "new normal".

    I just re-read some of my DD's old reports from when she was 2.5 and 3 y.o. (she's now 7) because I had to send copies to our Applied Behavioral Analysis case manager. DD really has made remarkable progress since she first started getting early intervention. Yes, she has a long way to go to catch up with her typically developing peers but the autism is much less severe now. Early, intensive intervention really does help tremendously!

    1. That is wonderfully encouraging, thank you for sharing!

  3. Hugs and so much love to you and your family!

  4. That 5th comment really bothers me. And I have a refutation of that. My nephew, at 5 years old, was severely autistic. At this time he was mostly nonverbal and very delayed. He is now 18 and on honor roll in 12th grade. He has also been accepted into one of the most prestigious universities in our area with a full scholarship. It has been a long fight for my sister but she has blazed so many trails that have set a precedent for autistic children in our area that are following after her son. Her journey amazes me and has helped many others. There is hope and a bright future. Not to say it isn't hard work. It is. But it is so worth the effort.

    Hugs to you and your family and especially to that beautiful little lady with a bright future of her own.

    1. I was really shocked to hear it, too! And that is so wonderful to hear about your nephew! I am incredibly grateful for all the pioneers who have made the way easier for the rest of us following them. :)


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