mumsnautism.net – Dorly O’Sullivan tells us her autism blog in this fascinating guest post.


http://mumsnautism.net/

http://mumsnautism.net/

As many of you know one of the objectives of PatientTalk.Org is to spread the word about different healthcare blogs. You know the ones written by the real experts (ie us) not being barked at my healthcare professional who knows little about our lives once they clock off in the evening.

Do today I am delighted to introduce a new blog called mumsnautism.net by Dorly O’Sullivan where she writes about the experience of being a parent with a child with autism. You can read O’Sullivan’s blog here.

She writes ” There are a lot of “us” out there. Parents, carers and other family members who live with young adults who are in the Autistic Spectrum (ASD) or have a dual diagnosis of Down Syndrome and Autism (ASD DS).

We want to protect our young people, or even not so young people. So there are things we don’t talk about. We don’t talk about antisocial behaviour, and we don’t talk about aggressive behaviour.

This doesn’t help our people, and it doesn’t help us. In order to find new ways, we have to face up to our challenges and accept them for what they are. Talking about it, sharing our experiences will empower us, and this in turn will enable us to find new ways to help or young people not to become even more isolated than they already are.


Let’s talk. And listen.

The idea of writing a blog came to me after reading an article in the Weekend Review of The Irish Times, May 30. 2015, by Rosita Boland, “Linda and Jake”. Linda’s son Jake has ASD and I think he is about 14. Linda feels very alone with her issues. One of them is aggressive behaviour. She says, “I wish people would talk about aggression”, and I agree with her.

Living with autistic people who display aggressive behaviour is a form of domestic violence, even if the perpetrator is not to blame and we love him / her to bits. It still hurts. We still have to find a way to live with it. Aggressive behaviour outside the home is limiting a good social life enormously for the young person concerned.

Other people will have other issues.

Let’s talk. And listen.

I’m not a professional. I’m a mum. I can only tell you about my experiences with my son. I would love to hear about your experiences, whether you are a mum or a dad or a carer or a family member. I would love to hear about your experiences, if you are a person with ASD. There is a great range in intellectual abilities in people with ASD, my son happens to be at the lower end of moderate intellectual disability, he cannot tell me anything verbally. But others can. I want to help him to have a fulfilled life. He can’t talk, but he can feel, he can experience. Just like the rest of us.

My stories are about my son, not about aggression. But aggression is a part of it.

My hope is, that the blog will eventually develop into a forum.

What is your story?”

OT Research Study: Parent Wanted! Parent Strategies for Increasing Eye Contact in Children with ASD – Please help 3 OT graduates with a survey.


Autism and Eye Contact

Autism and Eye Contact

As occupational therapy graduate students we hope to find ways to improve the quality of life of children diagnosed with Autism Spectrum Disorders (ASD) as well as their families. The goal of our research study is to identify methods parents have found to be the most successful for increasing their child’s eye contact and decreasing the amount of time their child spends visually perseverating (fixating on an object for an inappropriate period of time). Deficits in social communication are common in the ASD community, which can result in decreased social competence; thus, impacting the individual’s ability to use effective social strategies to interact with others, including initiating interactions, responding appropriately to others, solving conflicts, and maintaining sustained engagement in social interaction.

Children with ASD commonly have characteristic deficits in social-emotional reciprocity, nonverbal communication such as facial expression, gestures, eye contact, joint attention tasks, and rote and imaginative play, which can negatively impact their ability to orient and attend to social tasks, and engage in socializing. For many, eye contact skills are an important skill necessary for the development of social, cognitive, and language skills.


Several strategies have been found to be effective for increasing eye contact in children with ASD. Researchers have found that interventions during play, such as withholding items until the child requests them while making eye contact, reinforced the child’s behavior toward making eye contact. Strategies during play have also been used to increases eye contact in a child with ASD. These strategies include placing one’s face by a toy the child is interested in, imitating the child’s actions, or putting a preferred item out of reach and waiting for the child to make eye contact. Research has found that parents who imitated their child’s actions and used a preferred activity to engage the child, such as singing to them or wrapping them in a blanket, improved eye contact throughout the length of the parents’ interactions with their children. Other parental strategies include the use positive affect such as laughing, clapping, playful tones, and physical affection.
Through this study it is hoped that there will be a better understanding of the type of strategies (e.g., language, touch, auditory, visual-technology, object, exaggerated body placements, or other strategies) that improve eye gaze and eye contact. A benefit of this study will be to provide occupational therapists and other professionals, working with families of children with ASD, the ability to develop treatment plans according to what caregivers have found to be successful for decreasing visual perseveration and increasing eye contact.

If you or anyone you know are interested in participating in this study, please follow the link below:

https://www.surveymonkey.com/s/ASDparentstrategies

Thank you for your time.

Laura Perez, Macy Rhea Crenshaw, Divya Sakaria

The Relationship of Parent-Child Closeness, Number of Children and Pet Ownership with Perceived Stress among Parents of Children with Autism – please help a student at HELP University with his research.


As you know I am always keen on helping promote academic (and other ) research into ASD. Firstly

HELP University - Autism Research

HELP University – Autism Research

because I’m the father of a son on the autistic spectrum but also because I spend 20 odd years in market research. Of which a decade was in healthcare!

So when Sanjivan Padman of HELP University in Kuala Lumpur got in touch I was delighted to help out.

Sanjivan writes” I am an undergraduate student from HELP University. I am doing a thesis on The Relationship of Parent-Child Closeness, Number of Children and Pet Ownership with Perceived Stress among Parents of Children with Autism. It would be very helpful if any of you could share my online survey with parents of children with Autism. It would only take around 6 minutes to complete this survey. Your help is greatly appreciated. Thank you very much.

I seek your kind assistance to approve this request as soon as possible. Here is a link of the survey: https://docs.google.com/forms/d/1PVGpAfM6WEOJixY0T7R6rJLMH1CgVm64s6fNCli5asQ/viewform

Thank you for participating in this research. Please note that you must be a parent of at least one autistic child within the age of 3-18 years old to take part in this study. Before proceeding to the questionnaire at the back, please read and sign this consent form. If you have any questions to ask, you may contact the researcher via the contact details provided.

Description of the project:

You have been asked to take part in the study that aims to study the relationship of parent-child closeness, number of children and pet ownership with perceived stress level among parents with autistic children.


What will be done:

If you agree to participate in this study, you will be asked to complete a questionnaire that consists of demographic questions, Interpersonal Solidarity Scale and Perceived Stress Scale that would take less than 6 minutes to complete.

Risks or discomfort:

Your participation in this study is voluntary. The researcher does not anticipate any risk or discomfort besides minimal fatigue from this study. However, if you feel any discomfort, you may decide not to participate in the study. No adverse action will be taken against you for opting out. Feel free to contact the centre listed below for assistance if you do experience any psychological discomfort arising from this study:

Centre for Psychological and Counseling Services: 03-2096121

Benefits of this study:

Although there will be no direct benefit to you for taking part in this study, the researcher may learn more about the relationship of parent-child closeness, number of children and pet ownership with perceived stress level among parents with autistic children.

Confidentiality:

Your participation in this study is confidential and anonymous. None of the information will identify you by name. All records will only be handled by the researcher. All the data will be kept confidential. No personal information will be revealed to the public unless they are required by law to report information to city, state or federal authorities, or to give information to a court of law.

Decision to quit at any time:

The decision to take part in this study is voluntary. If you have decided to not take part in this research, you may quit at any time. Whatever your decision may be, no adverse action would be taken against you. If you wish to quit, simply inform the researcher.

Rights and Complaints:

This study has been reviewed and approved by the Ethics Review Board, Department of Psychology and Faculty of Behavioural Science at HELP University. If you have any problems or questions in relation to this study, you may discuss your complaints with the researcher supervisor or the chairperson of Ethics Review Board through the contact number or address stated below.

I understand that this research study has been reviewed and approved by the Ethics Review Board, Department of Psychology, Faculty of Behavioural Science at HELP University. For research related problems or questions regarding participants’ rights, I can contact:

Chairperson
Ethics Review Board
Department of Psychology
Faculty of Behavioural Science
HELP University
BZ-2 Pusat Bandar Damansara
50490 Kuala Lumpur, Malaysia
Phone: 03-27112000

If you have further inquiries regarding this study, please feel free to contact the researcher at the addressed stated below

Thank you.

Researcher – Sanjivan Thamby A/L Padmanapan jivan92@gmail.com
Research Supervisor – Alex Lui An Lieh luial@help.edu.my

Autism Pride Day 18th June 2015 – Please like and share to celebrate of the neurodiversity of people on the autism spectrum!


Autism Pride Day 18th June 2015

Autism Pride Day 18th June 2015

As you can see June 18th is Autism Pride Day.

We would ask all our readers as well to put this Facebook cover page on your profile and share with everyone you know.

Please also join us at the specially created Autism Pride event page on Facebook here.

My wife and I are very proud of our son and all he has achieved since his diagnosis with autism nearly six years ago.


Parents of Children with Autism – can you help a student California State University with a survey please?

California State University, Dominguez Hills

California State University, Dominguez Hills

We have been asked by Ariana LeBrun a student at; California State University, Dominguez Hills; to help her finds parent of children with autism to take part in an online survey.

LeBrun writes “I am currently a student at California State University, Dominguez Hills in the Masters of Science, Occupational Therapy program. I am currently working on a survey research study with 2 classmates, about the activities that parents of children with an ASD diagnosis do together. More specifically we are trying to learn what activities families do together that bring them closer to one-another and bring meaning to their lives.
I was referred to you by the AutismTalk FB group and it was suggested that I could post a link to the survey as a guest post on your blog.
I worked as an ABA therapist in the LA area for 5 years prior to beginning my master’s program and hope to continue to work with families affected by ASD once I graduate!
It is completely anonymous and has been approved by my university’s review board. Thank you so much! Feel free to use the comments box below if you have any questions. ”
Below is a link to the survey if you’d like to take part in it

 https://www.surveymonkey.com/s/WSMYVHN

Please share with anyone you think may be of interest.

Thanks very much in advance.