That Time I Turned Down a Screening

Earlier this week I got a phone call from the woman who has now screened three of my children for Early Intervention. Somehow, in a flurry of paperwork, I’d signed a paper agreeing to have the twins screened for Autism.

I called her back and told her we didn’t want the screening and apologized for wasting her time.

So why don’t I want the Autism screening? Because I already know what it would say.

Both of the boys have a significant speech delay. They are both approximating words and using them at the correct times, but neither has two-word phrases and both make a lot of unintelligible noises. This alone puts them in the “at-risk” category for autism.

I don’t think Louie has autism. I think he has speech apraxia. I think August has developmental delay linked to his extreme allergies to foods. Could he one day end up with a PDD-NOS label? I think it’s possible, but I’m not ready to pursue it.

Every parent has to make the best decision for their kids, but for me, I’m in no rush to get them label. In fact, I want to put it off as long as possible.

I know where we stand. I know what my boys can and can’t do. I fill out autism screenings regularly just to see how they’re doing.

I’m not eager for them to be labeled, however. I live in label town–Charlie has enough for a village.  I’m not afraid of labels. I am afraid of jumping the gun and sticking my kids with a label for the rest of their lives that they may or may not need. I will only look for that label when I think it will be beneficial and not before.

So no screening for us.

Not yet.

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Comments

  1. I’ve been reading your blog since before the boys were born. I love your writing, I love the way you so obviously and openly love your kids, and I love your honesty.

    This post really resonated with me because I teach young children (ages 2 and 3) with ASD and the diagnosis question is something that parents and professionals struggle with. In my experience, autism has become a catch all diagnosis for speech and other developmental delays. There are certainly children and adults who have autism, and it is absolutely a valid diagnosis. That being said, I can’t tell you how many parents are urged to accept a diagnosis of autism as a way of getting much needed services for their children even if their children don’t necessarily fit the criteria.

    It’s such a Catch 22. On the one hand the children need services and at least where I live the “best” services are provided to children with a diagnosis of ASD. On the other hand these services may not be appropriate because the child might not have ASD. One of my current students has an ASD label despite the fact that he has apraxia and sensory integration disorder. Why? An apraxia and SID diagnosis won’t qualify him for intensive services.

    This could be a silly question but what do the boys’ therapists think?

    Regardless of what you decide to do I wish you and your family all the best.

    • The boy’s therapist seem to believe rather firmly that there’s no good diagnosis for the boys. Most people when they meet them, do not think they have Autism, but there doesn’t seem to be a good word for what they have, so I think that leaves people at a loss. Apparently call people “late bloomers” or “slow to develop” isn’t acceptable any more. The speech therapist thinks Louis has apraxia of speech, but that’s not a covered diagnosis for Early Intervention, so it’s just something she says, but doesn’t write dow. The other therapists seem non-commital on whether or not he has other areas of apraxia.

      If I thought we’d get fantastic services, then I might pursue the Autism diagnosis, but right now we don’t need it, so I’m going with the diagnosis that we do have with is speech delay.

      • That’s completely understandable. So much of diagnostics and labeling comes down to politics and procedures. Apraxia is also not an EI label here hence my student who has apraxia but is labelled as ASD.

        Some kids don’t fit a label. Sometimes the symptoms/behaviors/features don’t fall into any one category. Sadly that doesn’t matter (at least in by age y area) because children need a formal diagnosis by age three if they are to continue receiving services. You’re right that the lack of a label leaves people, especially professionals, at a loss.

        I don’t know your sons, but you do and you and your husband know them better than anyone else. Clearly you are getting them the help they need, and I applaud you for not rushing to label them when there is no reason to do so.

        This could be a stupid question, so I apologize in advance, but have the boys seen a developmental pediatrician? I know that they often have waiting lists that are easily miles long but it might be worth looking into.

  2. Katy,
    I think I understand where you are coming from. I teach preschoolers with multiple disabilities and often people want to give my students the autism label because they are mostly non verbal. If you are non verbal, you tend not to socialize and I believe being non verbal itself causes a global lessening of developmental skills. If you don’t have the don’t have the give and take of language and ideas it lessens your experiential learning. I am not really sure this means you have autism per se.
    You are probably already doing this, but if they were my students, I would be looking at using alternative communication with them, pictures, sign language or switches and/or an iPad.
    Lisa

  3. sorry about the typos :)

    • I didn’t see any typos! :) I think that trying some augmentative communication would be great for them and LUCKILY, I have some experience in this area.

  4. I get it. I so get it.

  5. I’m not a commenter often, anywhere, but I do read your every post and I have to comment now. I must tell you that even if you suspect CAS, then the Kaufman Speech to Language Protocol is your therapy answer to tackling the apraxic monster. Nancy Kaufman is a world-reknowned godsend in this area, as she truly can crack open voices. Kids with apraxia are her passion. I have posted about our trip to The Kaufman Children’s Center in MI, where my daughter attended a 4 day, 1:1 “camp” with her. I left MI crying bc we live in VA and Nancy was the answer. We continue to use her technique, as do both of Oia’s ST’s, with her and she continues to make progress everyday. Please look into it…

    • Mo! Thank you so much for commenting. I am going to look into that. I’d love to do SOMETHING to help the boys and our current speech therapist is retiring and I have no idea who the next person will even be. If would be nice to get some guidance in this area, so we can make some good choices for the boys and their speech.

  6. Kristen says:

    Bravo! I made the same decision-against all medical advice-when my child was 2. The phrase that resonated with me was “You do not have to identify to treat.” I was fortunate enough to financially not need early intervention to pay for services or preschool. But in fact, I disliked the “professionals” who I employed to help my daughter and thought the “special,” recommended preschool was a joke. So we did no services-other than Mommy work and an amazing Montessori preschool. My daughter does not have autism, but she would have been diagnosed at age 2. At 5, she has friends, is socially appropriate, and is advanced academically.
    We are a label hungry society. No Child Left Behind has turned into No Child Without a Label. Research solutions and treatments. Get them help if necessary (if you need the financial help and their speech is severe enough, they can be screened and serviced for speech only). Work with your kids. But once again, BRAVO!

    • Thank you. I’ve been told by pretty much everybody that sees them that they don’t seem to have Autism, but I could go and get them screened and probably get an autism diagnosis. That’s just not something I want to do. Like you, I’d rather treat their deficits then have them labeled for life.