Are you are a parent whose child has diagnosed or suspected PDA or Autism

Hi, my name is Mandi Baker and I am studying for an MSc in Applied Research at Staffordshire University. I have worked previously with a number of children on the autistic spectrum, speech and language difficulties and with global complex needs. Last summer, I received my undergraduate provisional results, and the very same day was accepted on to the masters course, so  like any other mum, that evening I celebrated by pottering around tidying up after the kids were finally asleep in bed. In the background the TV was on, and I remember hearing the words “Born Naughty”, so I sat down in anticipation to watch – when Honey was good, she was very good, but her rage-filled meltdowns were alarming to watch, and instantly my heart went out to the parents.

Over the following weeks, I found myself asking the same question over and over where is the support for parents and of course the children?? Pathological Demand Avoidance Syndrome, a new sub type of autism, one that clinicians and educators seem to know little about.  I am not only fascinated by this condition but also very passionate about the support or lack of support for parents, particularly, whether their well-being improves after diagnosis? 

For my dissertation, I will be conducting research into, parent well-being in families of children with suspected or diagnosed Autism or Pathological Demand Avoidance.

The aim of the project is to investigate the associations between children with suspected and diagnosed Autism and PDA and the parent’s well-being along with the impact it has on their families. The emphasis on the diagnosis is important as the interventions in place for children with suspected PDA, are unsuccessful, due to the characteristics of the child. The strategies used for children with diagnosed PDA, conduct disorders or autism have been tested and have been found to be unhelpful because of the inflexibility of the demands used (O’Nions 2013).

So, if you are a parent whose child has diagnosed or suspected PDA or Autism and can spare 10 minutes to complete the online study please click the following link

http://staffordshire.eu.qualtrics.com/SE/?SID=SV_ezHVpgrYVx6rXjT

I want to make this as informative a piece of research as possible so please, if this description fits you (or anyone else you know), get in touch!

Many thanks,

Mandi

Email: b004105b@student.staffs.ac.uk

Selective mutism: another success story

Ralph, the speech therapy dog

Lucy (not her real name) aged 17 years had suffered with Selective Mutism all her life. It had blighted her school days and she was longing to leave school and escape her 'dreadful life'. She had been dreaming of the days she could finally do this, for years. Then over the summer, she thought about it and the reality hit her hard: nothing was really going to change unless she got some help to change herself.

Lucy's mother contacted Small Talk in August 2015 to see what we could offer. We discussed that we have done Maggie Johnsons's extension level SM training, animal assisted therapy, so we can use our team member Ralph the labrador, and CBT which is really useful for teenagers or older clients. A meeting was arranged at our clinic for the following week.

It's accepted that having  communication difficulty must get in the way somewhat but almost all the aspirations of a teenager such as getting a job, applying for college, passing your driving test, getting  a boyfriend/girlfriend etc all require confident communication. To be petrified of talking makes these things appear unattainable.

Lucy decided she wanted Ralph and her mother in on the first session and very bravely talked about her difficulties. Her mother added  detail so I was able to diagnose the SM which hadn't been done previously. Lucy cried into Ralph's neck and got lots of encouraging licks!

Lucy's story was one with which I am all too familiar and which makes me sad and angry in pretty equal measures. There had been a huge pattern of ignorance since she had started nursery aged 3. She'd had a variety of staff who had either ignored her SM or tried to force her to speak. At age 7 she'd seen a psychologist who had questioned her home life and accused her mother of 'some sort of abuse which would account for the mutism'. Bloody Hell!! Excuse my language! Her peers, apart from a  few, had called her names, ignored her or talked about her as if she wasn't there e.g. 'don't talk to her she doesn't speak'.

I explained that my role is to educate others, facilitate, encourage and support. We made a plan and I showed her how to set small steps to what she wanted. We started with applying for a Saturday job (part of the bigger goal of affording driving lessons). We looked all the aspects such as sending the application, thinking about the interview, imagining all scenarios, what questions etc. We broke it down into really small, achievable goals. She worked through these at a rapid pace.

In December, she got a part-time job at a well known supermarket. They were great and very keen not to discriminate against her because of her SM. They chose a role away from the public to begin with and would then be happy for Lucy to have a 'get out of jail free card' as she called it, which read, 'I'm sorry, I have a communication difficulty but I can take  you where you want to go'. She practised smiling while showing the card.

Lucy was surprised how easy the process was with someone to show her how to make it all seem more manageable. She decided she would do her own small steps to asking a special boy out!

Lucy now has a part-time job and a boyfriend but more importantly she knows how to achieve what she needs. On Friday, we discussed the driving lessons as the next target but she is confident she will only need me if she can't do it herself. Perfect! The positive Lucy who walked into my clinic last week is far removed from despondent one whom I met just a few months ago. She will encounter set-backs I'm sure but she told me that, 'It's easier not to try but if you don't try  you don't get anywhere either'.

I love my job!!

www.private-speech-therapy.co.uk