Parental views of raising a child with Autism or Down syndrome – please help a student at University of Derby with her research

A third year Psychology dissertation from the University of Derby, looking at parental views of raising a child with Autism or Down syndrome focusing on social stigmas and stresses.

University of Derby

University of Derby

Supervised by Dr Simon Bignell PhD, Cpsychol and Senior Lecturer at the University of Derby.

Ideal participants

Parents who have a child diagnosed with Autism or Down syndrome, there is no age restrictions on this study.

What the study involves

The study entails taking part in a short online questionnaire, which are a mixture of multiple choice and written response questions. The questions will involve:-

 Opinion on whether there are stigmas associated with the disorder
 Whether the disorder creates extra stress
 Whether information and support are in place to help at different points after diagnosis

If you would like more information about the study or would like to participate please contact Fiona Smith on f.smith8@unimail.derby.ac.uk


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?”

World Down Syndrome Day – Please like and share to show your support for the Lots of Socks Campaign


This Friday 21st march 2014 sees World Down Syndrome Day which hopes to raise awareness of Down Syndrome across the globe.

This year the theme is “Health and Wellbeing – Access and Equality for All”.  A theme. I think. we can all support!

Along side this they are running an awareness campaign called Lots of Socks.  They say “Down Syndrome International invites everyone across the world to wear LOTS OF SOCKS on 21 March 2014 to raise awareness on World Down Syndrome Day (WDSD).”  You can mind out more at their web site here http://www.worlddownsyndromeday.org/lots-of-socks

In the meantime why not share this page and the graphic below to help us raise awareness of Down Syndrome.

Lots of Socks - World Down Syndrome Day

Lots of Socks – World Down Syndrome Day


Down Syndrome Awareness Month 2013 – please like and share to help us raise awareness!

“Down’s syndrome, also known as Down syndrome, is a genetic condition that typically causes some level of learning disability and a characteristic range of physical features.”  Is the excellent definition provided by the UK’s National Health Service.

There is some great information for new parents on the Down’s Syndrome Association’s website.

For more information on Down Syndrome Awareness Month 2013 please go to http://www.ndss.org/About-NDSS/Newsroom/Recent-News/Down-Syndrome-Awareness-Month-2013/ which is on the US National Down Syndrome Society’s web site.

We have produce a graphic to help raise awareness of Down Syndrome Awareness Month 2013.  Please feel free to like and share.

 

Down Syndrome Awareness Month 2013

Down Syndrome Awareness Month 2013