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Questionnaire FOR EACH TREATMENT

Parents taking part in the IAN Research project answer a series of questions via the Internet from the comfort of their own homes and at their own convenience. They can stop the process at any time, starting again when they are ready. (This is a wonderful feature, as parents of children with ASDs experience many interruptions in their daily lives!)

Data collected from thousands of parents --stripped of identifying information-- will be shared with autism researchers seeking answers to crucial questions.

The Questionnaire for Each Treatment asks parents of children with an ASD for more information about each treatment or therapy their child currently receives.

1. Who or what most influenced your decision to start your child on this therapy/treatment?

 

  • Pediatrician
  • Primary care doctor or family doctor (other than a pediatrician)
  • Psychiatrist
  • Clinical Psychologist
  • School Psychologist
  • Neurologist
  • Team of professionals
  • Teacher
  • Speech Pathologist
  • Occupational Therapist
  • Behavioral Therapist
  • Another parent
  • Friend
  • Internet research/web article(s)
  • Print material/article(s)
  • Other

2. Does this treatment/therapy REQUIRE a prescription by a medical professional?

  • No
  • Yes

3. If so, what type of professional prescribed this treatment/therapy?

  • Primary care pediatrician
  • Primary care doctor or family doctor (other than a pediatrician)
  • Developmental Pediatrician
  • General pediatrician that focuses on treating children with autism
  • Subspecialist pediatrician (such as an allergist/immunologist or gastroenterologist)
  • Psychiatrist
  • Neurologist
  • Osteopathic doctor
  • Other

4. Is this treatment/therapy provided by or funded by the public school system, a state early childhood program, or other source of public funding (excluding Medicaid)?

  • Funded by and provided in the public school system
  • Funded by the public school system, but provided in another setting (at home, in a private school, or other community location)
  • Funded by State early childhood program
  • Other source of public funding (excluding Medicaid)
  • None of the above

5. Sometimes obtaining a treatment/therapy can be very difficult. Did you have to do any of the following to obtain this treatment/therapy?

  • Move to another state
  • Move within a state but to another county
  • Place your child into a different school
  • Travel more than 100 miles to see a professional or therapist
  • Enroll in a research study to obtain this treatment/therapy
  • Pursue legal action in any way to obtain this treatment/therapy
  • Go to a new doctor (specialist) just to get this treatment/therapy
  • Quit job (or significantly reduce hours) to either take child to treatment/therapy or to do treatment/therapy at home

6. Were you satisfied with the evaluation/work-up your child received prior to starting this treatment/therapy?

  • Yes - satisfied with the evaluation/work-up
  • No - not satisfied with the evaluation/work-up
  • Not Applicable

7. Which of the following symptoms was this treatment/therapy meant to address?

  • Social interaction (examples: eye contact, peer relationships, sharing interests with others, participation in social play or games)
  • Communication (examples: spoken language, augmentative communication, conversations with others, gestures)
  • Stereotypical behaviors and restrictive interests (examples: inflexible adherence to routines, repetitive body movements, compulsions and rituals, unusual preoccupations)
  • Maladaptive behaviors (examples: aggression, irritability, hyperactivity, tantrums, self-injurious behavior)
  • Executive functioning (examples: inattention, impulsivity, poor planning and/or organizational skills, transitioning issues)
  • Gastrointestinal (examples: constipation, diarrhea, vomiting, stomach pain, reflux)
  • Neurological (examples: sleep disturbances, headaches, motor deficits, sensory issues, seizures)
  • Allergic and/or Immunological (examples: eczema, asthma, ear or sinus infections, frequent colds)
  • Other

8. On a scale of 1 to 5, how much improvement did you expect this treatment/therapy to have in treating the targeted symptoms?

Think back to when your child first began this treatment/therapy. Try not to choose your answer based on things that happened after starting.

  1. I expected no improvement
  2. I expected a minimal level of improvement
  3. I expected a moderate level of improvement
  4. I expected a high level of improvement
  5. I expected a very high level of improvement

9. On a scale of 1 to 5, what was your impression of the potential risks associated with this treatment/therapy?

Think back to when your child first began this treatment/therapy. Try not to choose your answer based on things that happened after starting.

  1. I thought there would be no risk
  2. I thought there would be minimal risk
  3. I thought there would be moderate risk
  4. I thought there would be high risk
  5. I thought there would be very high risk

10. On a scale of 1 to 5, how difficult or burdensome did you anticipate it would be to use this treatment/therapy?

Think back to when your child first began this treatment/therapy. Try not to choose your answer based on things that happened after starting.

  1. I thought there would be no burden
  2. I thought there would be a minimal level of burden
  3. I thought there would be a moderate level of burden
  4. I thought there would be a high level of burden
  5. I thought there would be a very high level of burden

11. What has your experience been to date? Has this treatment/therapy improved the targeted symptoms?

  • Yes - My child's symptoms have improved
  • No - My child's symptoms have worsened
  • No - There has been no change in my child's symptoms

12. (If symptoms have improved) On a scale of 1 to 4, how much have the targeted symptoms improved following this treatment/therapy?

  • There has been a minimal level of improvement of symptoms
  • There has been a moderate level of improvement of symptoms
  • There has been a high level of improvement of symptoms
  • There has been a very high level of improvement of symptoms

13. (If symptoms have worsened) On a scale of 1 to 4, how much have the targeted symptoms worsened following this treatment/therapy?

  • There has been a minimal level of worsening of symptoms
  • There has been a moderate level of worsening of symptoms
  • There has been a high level of worsening of symptoms
  • There has been a very high level of worsening of symptoms

14. Is the cost of any or all of this treatment/therapy covered by private health insurance or by Medicaid?

  • No
  • Yes, private insurance only
  • Yes, Medicaid only
  • Yes, both private insurance and Medicaid

15. On average (in US dollars), how much do you pay for this treatment/therapy each month? How much are you still left responsible to pay after any insurance payment, educational subsidies, or public agency funding? (We understand that month-to-month payments may vary for a variety of reasons, so please give your best estimate of the monthly average.)

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