Home > Science > New Blood Work Tool Kit for Families and Practitioners

New Blood Work Tool Kit for Families and Practitioners

Posted by pediatric neuropsychologist Cassandra Newsom, PsyD, director of psychological education for the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) of Vanderbilt University Medical Center (Nashville, Tennessee), a member of Autism Speaks’ Autism Treatment Network.

On a daily basis, I interact with families and their amazing children with autism spectrum disorders (ASDs). Like my colleagues, I have seen many children with ASDs struggle with the routine blood work associated with their healthcare and participation in autism research programs. Parents, too, often become anxious as the time for blood work draws near. Nurses and phlebotomists, in turn, sometimes struggle ineffectively to communicate with and calm these young patients. Clearly, the resulting stress worsens the discomfort associated with blood work and creates negative associations for all involved in the process.

For these reasons, our team wanted to pool our knowledge about pediatric pain management—particularly techniques proven to help calm children with ASD. We wanted to improve everyone’s experience—that of the child, parents, and healthcare providers. And, so, we set about developing two of this month’s new ATN tool kits: “Take the Work Out of Blood Work: Helping Your Child with ASD” and “Take the Work Out of Blood Work: Helping Your Patient with ASD

To help us, we recruited a talented group of graduate students and post-doctoral fellows from our Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. Our LEND trainees set out across Vanderbilt’s campus—interviewing pediatric pain specialists, behavioral therapists, hospital-based child life specialists, and experts in developmental disabilities. They observed blood draws in a research clinic for children with developmental disabilities and scoured available research in the pediatric pain literature. Each team member made unique contributions to the final product based on their backgrounds in psychology, medicine, speech-language therapy, and developmental disabilities.

The resulting first draft of the tool kit focused on coping, distraction, and positive behavioral supports. We then solicited feedback from a parent advisory group at the Children’s Hospital Los Angeles, a fellow Autism Treatment Network site. As you would expect from such involved and dedicated parents, they helped us better envision the experience from the child’s perspective and provided insights into how we could encourage compassion and empathy on the part of the medical providers. They also reminded us that parents are the experts when it comes to their own child. So listen!

The team created colorful, engaging visual supports that tap into the strong visual processing abilities shared by many children with ASDs. In “test driving” the tool kits, we saw how these aids improved communication between medical providers, parents, and children. (Parents can even decide how much detail is appropriate for their child by selectively printing those visuals they feel provide enough—but not too much—detail.) Rewards are another important aspect of our guide, one that parents can tailor to their child’s interests. We also considered a child’s sensory needs in designing distraction activities and providing tips on setting up the clinic environment. Finally, both parent and provider tool kits actively promote collaboration between all treatment team members.

Our tool kits are now beginning to find their way into the hands of medical providers, researchers, and parents; and the response thus far has been overwhelmingly positive.

We hope you will download the parents or providers tool kit, give it a try, and share your experiences with us! Do you have tips for insuring successful blood draws or medical visits with your child or patient? Share your tips at atn@autismspeaks.org, and we will incorporate the best into our website at http://kc.vanderbilt.edu/asdbloodwork.

The Autism Speaks ATN/AIR-P Bloodwork Tool kits are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS.

  1. Sarah
    September 20, 2011 at 8:49 am

    Holy moley. I’m amazed by the amount of detail, work and dedication. I actually read this one out to my husband this morning (on my hand held device), as I was blown away by the investment for this issue.

    Blood work is not a problem for our child, so I really have no clue what everyone faces. I had now idea what a difficult problem this is or how widespread.

    Note: Duh! It clearly make sense with all or our children’s many, many subtypes, difficulties and differences.

    So THANK YOU on behalf of the families where this is a big deal.

  2. deb
    September 20, 2011 at 10:33 am

    wow, we just gave up on this battle earlier this month-didn’t want to fight it. Thanks for all of your research! How do I download the parent kit?

  3. Maggie
    September 20, 2011 at 11:02 am

    Constant struggle here…happy to see it’s being taken seriously.

  4. September 20, 2011 at 1:42 pm

    Think of how much more research can be conducted if we have willing participants who are not traumatized by the exerience. It is a win-win all around. Great work!

  5. Andrew's Mom
    September 20, 2011 at 8:08 pm

    My son just had his genetic testing with multiple vials of blood taken two weeks ago through the ATN in Pittsburgh. We handed him a Thomas the Tank Engine train to hold onto and put on Sesame Street on the computer. He was in agony and screamed to be released from the nurses who were drawing. I held him down to keep him from thrashing. He still has a bruise on his arm and I feel terrible, but sometimes it’s better to just bite the bullet and promise your child some icecream or something afterwards. We had a good heart to heart over our cones and told my favorite three year old I was (and still am) so proud of him even though I knew it hurt a lot.

  6. Molly
    September 21, 2011 at 4:56 pm

    We dread hearing the words, “We’ll need to do some blood work.” I can no longer take my 5 almost 6 year old on my own to have his blood drawn so my husband has to come as he is strong enough to hold my son still. What I am amazed at is how little understanding and special training health care staff at children’s hospitals have in dealing with kids on the spectrum. I would think by now special training would be part of the job.

  7. AprilMay
    September 23, 2011 at 1:14 pm

    My son has had blood work drawn twice. He does not like it and is anxious about it, but it’s not terrible. I have to explain in detail what is going to happen. He needs lots of reassurance that everything is ok and I’m here for him. He sits on my lap and I hold him tight (for comfort not restraint). I then distract him with his one of his special interests, math problems worked well. He loves to hear me brag about how smart he is !!! Oh and stickers afterwards, a must!!

  8. February 8, 2012 at 4:51 pm

    This article is full of good information for parents with children and even adults who frequently have their blood tested and have anxiety when being tested.

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