Winburn et al. (2014)

Question 1

What do the media and internet say about treatment for ASD?

Answer 1

Children with ASD receiving 4-6 interventions on average
Younger children- dietary and behavioral/educational/alternative interventions more likely
Adolescents- pharmaceutical interventions more likely

Question 2

Dietary interventions

Answer 2

Restrictive diets
Sometimes there is already a self-imposed restrictive diet
Problems/adverse side effects?
Gluten-free Casein-free Diet
Success?

Question 3

Purpose?

Abstract

Answer 3

***Assess attitudes of parents and doctors who treat ASD about dietary interventions

Parents of children with autism spectrum disorders
(ASD) use a wide range of interventions including
poorly evidenced dietary interventions. To investigate
parents’ and professionals’ experience of dietary interventions and attitudes towards a proposed trial to evaluate the gluten free casein free diet (GFCFD). Survey of UK parents of children with ASD, and professionals. 258 parents and 244 professionals participated. 83 % of children had received a range of dietary manipulations; three quarters of professionals have been asked for advice about GFCFD. Respondents identified an inadequate evidence base for dietary interventions in ASD and suggested modifications to a proposed trial design. Both parents and professionals supported the need for further evaluation of dietary interventions in ASD.

Question 4

Participants?

Answer 4

We aimed to survey 246 UK parents of children with an
ASD and 246 UK child health professionals working with
children with ASD.

Question 5

Materials?

Answer 5

***Survey about attitudes about restrictive diets and types they think are effective

Two versions of a survey questionnaire (parent and professional) were designed and piloted. Questionnaire
development was undertaken in consultation with parents and child health professionals. Most questions required fixed-choice responses, though for some items there was the facility for brief free-text responses. The questionnaire was presented in four sections: demographic characteristics; experience and use of interventions for treatment of ASD in young children; research priorities; and a final section contained a summary description (‘vignette’) of the design for a proposed double-blind, multi-site randomized
controlled trial (RCT) to evaluate the impact of GFCFD in
young pre-school children with ASD together with an
illustrative flow chart (see ‘‘Appendix’’). 

The vignette included an explanation of the need for randomization and the procedures for access to proposed levels of additional professional support (dietitian and pediatrician). The vignette also included a description of ‘Test Foods’ (two versions of food products such as biscuits, muffins or porridge), manufactured to be either GFCF or containing precise quantities of gluten and casein) that would be included in the children’s diet for the duration of the RCT, so that all parents and researchers remained ‘blind’ to the introduction of gluten and casein to half the children in the trial. Once survey participants had read the vignette and flowchart, they were asked a series of questions with fixed-choice responses (with space for brief free text comments) to ascertain opinions about the proposed trial design and levels of clinical support. This section of the questionnaire was devised to investigate possible barriers and facilitators to recruitment and retention
of families within the proposed research design. Other
details about the trial (such as the inclusion/exclusion criteria and safety plan) were not included, in order to keep the vignette brief.

Paper forms of the survey questionnaires were available
for respondents who did not have web access or expressed a preference for a paper version (Copies of the questionnaires are available from the corresponding author on request).

Question 6

Procedure?

Answer 6

The study took place over 10 months between April 2009
and February 2010. Participants initially accessed the
Newcastle University PADIA (Parents’ and Professionals’
Attitudes towards Dietary Intervention in Autism) research
website (http://research.ncl.ac.uk/cargo-ne/PADIA.html) to
express their interest in the survey, completed a short series of questions regarding their status (parent or professional), email address, postcode (zip code) and source from which they heard about the study. Each participant was allocated a unique identification (ID) number to access an information sheet and consent form before completing the full survey anonymously. All respondents were given the opportunity to enter a free prize draw to win a laptop
(separate draws for parents and professionals). The two
stage recruitment procedure was used to ensure collection consent and socio-demographic information, protect confidentiality and reduce risk of repeated responses.

Once a unique ID had been allocated, if the questionnaire
had not been completed, automatic reminders were sent to the associated email address at 2 and 4 weeks after
registration (Edwards et al. 2007; McColl et al. 2001).
All survey responses were transferred to SPPS 15.0 for
Windows software package for analysis. Descriptive statistics
were used to summarize the experiences and attitudes
of parents and professionals.

Question 7

Results?

Discussion?

Answer 7

*** 83% had tried a range of dietary manipulations (Gluten free, casein free, soy diet). Most reported change in bx with significant improvement although 10 showed worsening anxiety and aggression. 73% said insufficient evidence, said they would support families, but not recommend it. 19% said they would advise against it.

83 % of children had received a range of dietary manipulations; three quarters of professionals have been asked for advice about GFCFD. Respondents identified an inadequate evidence base for dietary interventions in ASD and suggested modifications to a proposed trial design. Both parents and professionals supported the need for further evaluation of
dietary interventions in ASD.

Question 8

Proposed RCT

Answer 8

No RCT

Question 9

Information from Class

Answer 9

Dietary - b/c of the media
Adolescents - pharmaceutical becomes more likely b/c it makes their bx more manageable.
Gluten-free, Casein-free diet?
- Success: Parents report high success, but this is difficult to determine. All parental report whether it improved their bx or not. Causation fallacy - the assumption that you administer an intervention and there is improvement, they believe the change in symptoms is due to the intervention.

*There’s not a real reason biologically to say why it would work.