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


Do you feel (have you felt) stigma because of a medical condition?


Sunny Beach - Bulgaria

Sunny Beach – Bulgaria

When our son was diagnosed with autism (just over six years ago) it took me months to tell many of my closest friends. Why? Because I was at the time ashamed of the fact our beautiful (and yes at times difficult) son had such a disability.

I don’t feel that now but if I am truthful I do occasionally feel a pang of regret about things that i thought I would do with him but now never will. Though in fact you don’t need a child with a disability to feel that.

So I was wondering am I alone?

Have others felt shame and stigma because of a medical condition?

If you have it would be great if you would share a bit more about your story in the comments section below.

Also we have set up a poll on the subject below. It would be great if you could take part.

Many thanks.

PS There is a reason for the picture of Bulgaria. But that is for my wife and I!


“Travel my journey before you judge me” – Behaviours that parents of children on the autism spectrum find most stressful and difficult. Karen Brown reveals the results of her recent research

Autism Awareness

Autism Awareness

In this guest blog Karen Brown shares the results of her recent research in the behaviours of autistic children and the challenges to parents.  Brown says “I am very grateful and thankful to all the parents who took the time out of their already busy lives to complete my survey. A lot of parents passed my survey onto others, and many parents gave me encouragement, positive feedback, and took the time to personally contact me. I admire and respect their attitude and dedication to their amazing children. Thank you to my beautiful children Justin and Chloe, who have inspired me to learn all I can about ASD and gifted me with the experience of seeing the world through different eyes. Thank you to my supervisor Associate Professor Cyril Latimer, who answered my emails so promptly, gave advice, yet encouraged so much freedom, and supported me when I need it. “

 

The purpose of this study was to research what behaviours parents of children with ASD found the most challenging, difficult and stressful. Total response rate from parents was excellent with 417 responses at the time data analysis began. After controlling for missing or incomplete data, final number of participants for statistical analysis was 348. Of the 348 respondents, 219 requested a copy of the results.

There were 333 female parents and 15 male parents from multiple countries around the world: United Kingdom 71, Europe 9, United States 120, Asia 4, Australia 112, New Zealand 10, and Other 22. Information for the children was: 77 female, and 271 male, with 266 under the age of 12 years and 82 over the age of 12. Category of diagnosis was segmented into autism 129, Asperger’s 169, and PDD-NOS 50.

Investigations of child gender revealed no significant effects on parental stress, therefore indicating gender of child is not linked to higher or lower stress in parents. Diagnostic category of Autism, Asperger’s, or PDD-NOS was also found not be linked to parental stress, with no difference in parent stress found between the three categories.

Age was segmented into two group of over 12 years of age and under 12 years of age. Age was found to be linked to parental stress with parents of children under 12 years of age experiencing significantly higher levels of stress than parents of children in the older group.

Questions from the survey were segmented into four groups representing the categories of development, behaviour, future and stigma. All four categories were significantly related to parental stress. The most significant category related to parental stress was stigma, followed by behaviour.

The questions with the highest means for stigma were: “How your child is viewed by other children?”, “How your child is viewed by adults?”, and, “Your child displaying difficult or challenging behaviour?” Questions with the highest means for the category of behaviour were: Anger and outbursts, Child’s behaviour being the focus of attention, and, Screaming and yelling.

Highest rated questions for future were: Future outlook for your child for close social relationships, Future outlook for your child’s employment, and, Future outlook for child’s romantic relationships. Questions with the highest means for the category of Development were: Being included socially, Ability to make and retain friendships, and, Sensory difficulties.

It was clear that the main concerns parents had were in relation to the stigmatisation of their child, friendship development and the children’s acceptance by their peers. Challenging behaviours were strongly related to parental stress and the stigmatisation that parents felt when these behaviours were in public was also significant.

Feel free to use the comments box to ask any questions or comment on the results of Brown’s research.

Ill health and Stigma! Why it happens and how to fight it?


A few months ago an old friend of mine was diagnosed with relapsing remitting multiple sclerosis. 

Stigma and ill health

Stigma and ill health

  She is, obviously, now at the beginning of a long journey to fight multiple sclerosis and I’m happy to say that she seems to be doing well at this stage.

But one thing interested me enormously. She has decided not to tell her family about her multiple sclerosis.  Clearly it is her choice and she has some very good reasons not to do so.

That being said it has led me on a train of thought about the subject of openness about medical conditions to family, friends and employers.


For full disclosure I should explain that I am the parent of a son with classic autism.  It took at least two years from diagnosis for me to be happy (if that is the right word) about being open about his autism to anyone but very close friends and family.  Now I’m very used to explaining his diagnosis in new situations to explain his behavioural challenges.  That being said this did take me a long time to get used to.  So I understand why people keep quiet about it.

For example we ran a poll a few months ago asking if people felt that they had been discriminated at work because of their medical condition.  As of writing just over 70% of respondents believed they had been discriminated against.  You can see the results of the poll here https://patienttalk.org/?p=852.

But and there is a but here.  If we are silent about our and our loved ones medical conditions does that not mean we are allowing the stigma of illness both mental and physical to remain?

So really I’m opening up the floor to you.

It would be really great if you could share your thoughts on health and stigma?

a)      Have you been diagnosed with a chronic condition?

b)      Do you feel there is a stigma attached to that condition and if so why does it occur?

c)       Are you open about that medical condition to family, friends and workmates?

d)      How is it best to fight any stigmas and discrimination which may go hand in hand with health issues?

Please feel free to share your thoughts and view on the matter.  Feel free to use the comments box below to answers the above questions or add any of your own.