Autism research – Are you the parent of a child on the autism spectrum?

St John's University Autism Research

St John’s University Autism Research

Christia Goodman has asked us to help her find people to participate in a short online survey.

Goodman told us “I am a doctoral psychology student at St. John’s University. I am looking for parents of children with Autism or a developmental disability ages 3 to 18 to participate in research for my dissertation study.  I volunteer for an organization called Autism Friendly Spaces that transforms spaces (plays/shows at the theater, restaurants, museums) to accommodate individuals with autism: http://autismfriendlyspaces.org/ My research is seeking to better understand community participation in families of children with Autism and developmental disabilities, specifically, what promotes and prevents families of children with ASD and DD from participating in the community. The study requires participants to complete a short 10-15 minute online survey. After completing the survey, participants will get a chance to enter a raffle to win a $50 gift card!

I am a clinician that works with families of children with autism and I am hoping to find out how to improve quality of life for these families by learning more about how these families participate in the community.”

You can take the survey here.

https://stjohns.az1.qualtrics.com/SE/?SID=SV_3QbIewdpUj4sejz

If you have any queries please contact Ms Goodman at christia.goodman12@stjohns.edu

Thanks very much for your consideration.

A Survey of Fibromyalgia Patients’ Journey to Diagnosis and Treatment.

Fibromyalgia Survey and Research

Fibromyalgia Survey and Research

 

We have been asked by Pamela Andrews at PhD student at Glasgow Caledonian University to help her find people with Fibromyalgia to help her with some research.

Andrews writes ” I am a PhD student within the Health and Life Sciences department at Glasgow Caledonian University. I am conducting a study into the journey patients take from presenting with their first symptom through to receiving a diagnosis of fibromyalgia syndrome and subsequent treatment.

The study requires participants are aged 18 and over and have received a diagnosis of fibromyalgia. The study will involve an online questionnaire, which will include a series of surveys asking about the journey leading to a diagnosis, what happened immediately following and what treatments were prescribed by your healthcare provider and which ones you researched yourself.


The purpose of this research is to understand the patient journey from the initial symptom to diagnosis and subsequent treatment. Following the diagnosis, the study aims to examine the treatment pathways made available to you and the experiences you have had with this along with the effectiveness on symptoms.

If you agree to take part in this study, you will be asked to complete an online survey, this survey will ask about:

Journey leading to a diagnosis
Immediately following the diagnosis
Treatments prescribed
Treatments tried

It will take approximately 20mins to complete. Questions asked will either involve selecting from a few options or a sliding scale, in addition you may be asked to give brief responses. If you feel you need to take a break at any time, the survey may be saved and you can then return to it at a later date.”

The link to the survey can be found here.

For more information Ms Andrews can be contacted at pamela.andrews@gcu.ac.uk

Many thanks in advance for your help!




‘Is it more beneficial for children with autism to be educated within a mainstream school or a Special Educational Needs setting?’ Please help a student with her research!

Autism Awareness and EducationChildren

Autism Awareness and Education

My name is Alanah Patterson and I am currently a  sixth form student studying a BTEC Level 3 National Diploma in Children’s Play, Learning and Development. As part of my course, I am required to carry out a research project into a related subject of my choice, where I must gather both primary and secondary research to be included within the project.

The question I have chosen to research is ‘Is it more beneficial for children between the ages of 2-8 years with autism to be educated within a mainstream school or a Special Educational Needs setting?’ All primary information gathered and used will remain anonymous and will only be viewed by myself, my teacher and the external examiner. In order to accurately analyse my findings, I will require information from both parents/carers and practitioners who care for and work with children with autism. I have attached the two questionnaires below and would hugely appreciate anyone who could spare a little time to complete my survey as this would massively help with my project. Thank you!


Questionnaire for practitioners/those who work or have worked with children who have autism: https://www.surveymonkey.co.uk/r/RQSJG7G

Questionnaire to parents/carers of children with autism: https://www.surveymonkey.co.uk/r/RWMJQW5




Parents of Children on the Autism Spectrum – please help with a new research project!

As you know at Patient Talk we are always very happy to help promote research into autism and ASD. A few days ago we were contacted by Elizabeth Hooks who is a doctoral intern studying School Psychology at Ball State University. Ms Hooks asked up to help her find parents of children on the spectrum to take part in a new project!

Hooks wrote “I am a doctoral intern studying school psychology at Ball State University and doing my internship at Kennedy Krieger. I was hoping you would be willing to post my dissertation recruitment flyer.

We are looking for kids with autism, ages 12-18, who have a 4th grade reading level. We are asking them to fill out a personality assessment form, which assesses for rates of anxiety and depression in neurotypical teens. We are hoping it can be used to accurately diagnose these conditions in teens with autism as well. We are offering a $15 itunes gift card and they will be entered into a raffle for 6 $100 visa gift cards.”

Ball State University - Autism Research

Ball State University – Autism Research

Liz Freeman Floyd, M.A., is a doctoral student in the School Psychology program at Ball State University. Her graduate training experience includes providing psychoeducational assessment and counseling therapy in both educational and clinical settings. Liz participated in the design and implementation of the Ball State Center for Autism Spectrum Disorder’s employment evaluation research study as a graduate research assistant and will intern with the Center during the upcoming academic year. Prior to entering graduate school, Liz served on the boards of directors of the national Autism Society, the Indiana Autism Coalition, and the Autism Society of Indiana. Following graduation she plans to provide assessment and counseling services to individuals and families living with autism spectrum disorder and other developmental differences.




Elizabeth Hooks, M.A., is a doctoral intern studying School Psychology at Ball State University. She is currently interning at the Pediatric Developmental Disorders Clinic and Neurobehavioral Outpatient Unit at the Kennedy Krieger Institute (KKI) and is working to gain licensure as a Board Certified Behavior Analyst at Ball State University as well. During her graduate training, Elizabeth gained experience working in several school districts throughout Indiana and worked as an early intervention specialist for children with Autism Spectrum Disorder and other developmental disabilities. Following graduation, Elizabeth plans on providing assessment and diagnostic services for families, and behavioral (ABA) therapy to families who have children and adolescents with developmental disabilities.

David E. McIntosh, Ph.D., is the David and Joanna Meeks Distinguished Professor of Special Education at Ball State University. The author of numerous scholarly publications, Dr. McIntosh is editor-in-chief of the peer-reviewed academic journal Psychology in the Schools. He was instrumental in the creation of Ball State’s Center for Autism Spectrum Disorder, an on-campus center founded to address critical gaps in services available to the autism community through research, training, and capacity-building activities. Dr. McIntosh’s research interests include the identification, assessment, and treatment of individuals on the autism spectrum. http://cms.bsu.edu/academics/collegesanddepartments/teachers/directory/deptofsped/mcintoshdavid

Broad Autism Phenotype Questionnaire – A student at the University of Edinburgh is looking for parents of children on the autism spectrum to help her with some research!

University of Edinburgh _ Autism Research

University of Edinburgh _ Autism Research

 

We have been asked by,  Rachel Donaldson , at Master’s Student at the University of  Edinburgh to help her find parents of children on the autism spectrum to take part in a survey!

Donaldson writes “OkCupid, a popular dating site, as part of the many quizzes you can take to find your ‘match’, published a (flawed) version of the Broad Autism Phenotype Questionnaire. Broad autism phenotype is mild personality, language and behavioural ‘autism-like’ traits in individuals without a diagnosis of autism.

This led to Cynthia Kim (Musings of an Aspie) writing about the concept of broad autism phenotype on her popular blog about ‘Life on the Spectrum’. It is here that I first saw individuals on the autism spectrum and parents of individuals with autism discussing the concept of broad autism phenotype and how it impacted them. And such, a research project began.

Over the last 30 years there has been an increasing amount of research into broad autism phenotype which has mainly involved parents and siblings of individuals with autism and focused on similar areas to autism research. However, there has been little research into whether parents are generally aware of the concept of broad autism phenotype and how they feel about the idea; whether they feel it is an important area for research; and whether it impacts upon them and their relationship with their child(ren) with autism. This study aims to address these questions. If you are a parent of an individual with autism and are able to assist with this research please follow the link.

No previous knowledge of broad autism phenotype is required: https://edinburgh.onlinesurveys.ac.uk/parental-views-of-bap

If you have any queries please put them in the comments section below.  We will ask Ms Donaldson to reply.