Home > Science > ATN welcomes families as advisors

ATN welcomes families as advisors

This is by Staff blogger Rick Kolan, Program Officer with the Autism Treatment Network at Autism Speaks.

Organizations strive to please those they serve, often saying that “the customer is always right.” Striving to meet, and if possible, exceed customers’ expectations is a common business goal. To adequately meet these needs, businesses frequently solicit customer feedback on their products and services in the hope of improving performance.

As Autism Speaks’ Autism Treatment Network (ATN) sees its fourth year, we have taken that concept to the next level. We have engaged families at each of our ATN sites to constitute a Family Advisory Committee. Their role? To provide their perspective and that of their children concerning the care and service they receive at our ATN centers. We have also asked them to help map our direction into the future, providing us ongoing advice on the issues that are important to them now and as their children progress.

Since the beginning of the year ATN sites have been selecting parent representatives and alternates willing and available to attend local ATN site meetings, conference calls and the periodic national meetings of ATN leadership and clinicians. The aim is for the committee to help guide ATN policy and planning at the national level while partnering with their local ATN clinicians to enhance care and services at the individual site.

During the week of June 8-10 the Family Advisory Committee (FAC) met in Washington DC to take part in an ATN/AIR-P Steering Committee Meeting.  The event marked both the kick-off of the ATN/AIR-P Quality Improvement Collaborative and the inaugural meeting of the FAC.

FAC members met for the first time on Wednesday morning.  As representatives introduced themselves around the conference table, it was clear that each brings a unique array of skills and experience. Yet in spite of differences in their backgrounds they immediately found common ground. Each member has a sincere desire to improve care for people with autism, from age toddler to adult, in the belief that the ATN’s commitment to family-centered care is more than simply words.

Even at this initial meeting the FAC provided an important perspective as certain themes repeatedly emerged in the course of open discussion:

  1. Aging and ASD
  • What will happen to my child as he/she gets older? There is plenty of support while they are young, but parents are commonly at a loss as their children get older.
  • Continuity of care across the spectrum, as well as across age groups, is needed.
  • Transitions – to adolescence and to adulthood—are especially difficult.
  • Families need guidance in advising employers on how to support workers on the spectrum.
  1. Affect on family
  • Autism is a family diagnosis.
  • Autism affects where families choose to live.
  1. Transfer of information and knowledge
  • Much of the information families get or give is by word-of-mouth
  • Messages must be delivered in a way so that parents really understand what certain tests and screenings can and cannot do.
  • How do we get information to families that are not directly part our network (families in the “dark spots”)?
  • How do we make sure that needed information is available at the primary care and the well-child levels, so that clinicians and families know what to do if the child starts to change?
  • The culture at the various resources, including doctors, needs to change; just because a tool kit is out there it doesn’t mean the doctor will use it.
  1. Care for the whole-person
  • Care is fragmented with different sectors dealing with different aspects of a child’s needs: schools, PCP, speech, early intervention.
  • Schools as well as doctors need to see the child as a whole being.
  • Schools and doctors need to collaborate on the child’s care. It doesn’t work if the doctor says the child should have certain accommodations or support and the school doesn’t work to make that happen.
  1. A key Challenge
  • What can we do when we develop effective therapies or other solutions but families cannot afford them and insurers won’t pay for them?

This first FAC meeting demonstrated the group’s potential for generating practical ideas that will keep the ATN focused on the family as we move forward.

  1. Maggie
    June 22, 2011 at 7:50 pm

    My brother has never been diagnosed with having any signs of Autism. At age three he did not speak a word, he got speech therapy but still struggled all throughout his life when talking. At a very young age he used to watch the wheels of his toy cars, liked strict structure, and was very irritated with certain sounds and when exposed to social situations. He still struggles today! These are all things that got my 2yr old son diagnosed with PDD(pervasive delay desorder) which is within the Autistic Spectrum. My worry is….will my brother be able to live a close to normal life if he is able to get diagnosed at his 26 yrs of age?! And how can he be able to get diagnosed?!

  2. June 23, 2011 at 6:11 pm

    I had no idea there was a comittee for parents to get involved and share common questions and concerns regarding their children living with autism. I love ATN’s idea of letting parents come together and speak for their children who may not have a voice to express their feelings.

  3. Katie Wright
    June 24, 2011 at 9:31 am

    I wish there was more specific discussion of medical problems. ATN is about treatment right?
    I was hoping to see bullets addressing severe medical problems like GI disease, regression, adverse vaccine response, autoimmune problems, food allergies….
    Aging and school problems are important issues but in this context? Shouldn’t the primary focus be supporting top quality clinical treatment, training of doctors? Then move on to the wider context?
    Right now few parents can get basic medical help for ASD kids via hospitals.
    Why nothing about all the wonderful physician training available at ARI? There are great 3 day workshops for doctors regarding ASD and biomedical interventions.
    That would be a great place for ATN to start.

    • Tami
      June 24, 2011 at 12:57 pm

      Katie, isn’t there something your parents can do about the direction of the organization they launched? Autism Speaks has gotten soooooo off course. At the rate they are going, our kids will all be aged out of the system before we get any help.

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