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Research: Maternal Experiences Of Their Child's Autism

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#1 VerityLM


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Posted 16 November 2014 - 12:44 PM

Hi All,

My name is Verity and I’m a teaching assistant at a school in Wimbledon for children with special needs. I’m currently undertaking an MSc in the Psychodynamics of Human Development through the School of Social Science, Birkbeck, University of London.


I am recruiting participants for my dissertation research project, which will explore the experiences of parents whose children have been diagnosed with Autism. I am hoping to understand a bit more about what the diagnosis means to family-life, and what has influenced these experiences. Participants must be mothers of children who have an Autism diagnosis. 

Participation would involve a 1-1.5 hour semi-structured interview at a convenient and private location (possibly your home, or a room on University grounds). This will be recorded to aid my transcription. After which, a code will be attached to your data so it remains totally anonymous and the recorded data will be destroyed. This dissertation has received ethical approval through Birkbeck School of Social Sciences. 


Topics would include: 
The mother’s experience of the diagnosis process 
The mother’s experience of her relationship with her child 
The mother’s experience of support/understanding from family, friends and professionals 
The mother’s experience of her child 
The mother’s understanding of ASD 
The mother’s interpersonal experience 


If you agree to take part your anonymity will be assured, and you are able to stop the interview at any stage and are under no obligation to discuss anything you are not confortable with and can withdraw consent at any time. 
My dissertation is supervised by a University staff member, who may be contacted at any time. I am able to give you his details via email (I'm uncomfortable posting them online). 

Please do let me know if you would like to participate in an interview towards my research. I am very interested in, and very passionate about this area, and would love to hear from people to increase knowledge and understanding around these experiences. 
Best wishes, 

#2 imperfect parent

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Posted 16 November 2014 - 01:09 PM

I'm always willing to help with research, but I live too far away to help with yours unless you can interview via Skype. I just wanted to say that that the experience of diagnosis differs from area to area, but also within the same area.  Despite much publicity the process is not getting easier and support is almost none existent in our area with a serious lack of knowledge compounded by a "professionals know best" approach rather than proper consideration of individuals and their families.


I travelled 250 miles to get a diagnosis for my eldest son (NHS funded) and a similar distance for his younger brother when our local health board took years to assess.  It wasn't that they weren't willing to see my younger son, it was their failure to engage him which in turn led them to prevaricate for  many months after the final decision had been promised.

#3 bluewater


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Posted 18 November 2014 - 05:09 PM



I tried to reply to this yesterday and I couldn't get it to work. I am also too far away to help, but I agree with the variability / difficulty of getting a diagnosis and lack of support.


We have always struggled with ds1's behaviour, lots of anger etc especially outwith school, but it was only after our 3rd child was born that the health visitor listened to what I was saying and referred him to the paediatrician (he was then 7). It took 2 years from that point to diagnosis (after we reminded our speech and language therapist - they had forgotten no formal conclusion had been reached).


Since then, ds1 has had a few SLT sessions to introduce him to his diagnosis. We have had next to no support - a few sessions with CAMHS when ds2 was injured in an incident at primary school, where they spoke to me only and I tried to implement strategies to help reduce s1's anger. No support during the transition to secondary despite recommended in SLT's initial report - in fact it turned out our primary school forwarded no information at all on ds plan. We now have an angry/disengaged 13 year old who often refuses to go to school.  CAMHS takes 6 months to give you an appointment. When I contacted the NAS help line, they took 3 weeks to reply!


The best help we have had has been from the council's autism outreach service - they got back to an email today in less than 2 hours, and we went on a very good 1 day course in the summer - they also run support groups but are 1.5 hours away.

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