Why did my PDA son have to fail in five schools before I was listened to?

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This post is with our huge thanks to:
Special Needs Jungle – http://www.specialneedsjungle.com
for their continued support in raising the profile of Pathological Demand Avoidance Syndrome.

Why did my PDA son have to fail in five schools before I was listened to?

#PDA Awareness Day- Sunday 15th May 2016

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PDA Awareness Day is Sunday 15th May (thats this weekend:-)

As its National Limerick Day today I thought Id make up a little limerick for Sunday… If you like it, please feel free to share especially on PDA Sunday x

Autism they said is like Rainman
PDA they said is naughty kid syndrome
They have closed minds bound by fear
and would rather we all just disappear.

Judgemental faces they simply cannot relate
Instructing us to medicate & sedate
They really don’t want to understand
Nor will they ever try to lend a hand.

Don’t look down on us with expression so glum
We simply march to the beat of our own drum
My last point for your personal reflection
is wake up people, we are all on the spectrum!

The trouble with grouping conditions under one umbrella …

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Consideration relating to this article – http://fb.me/1wXWBuW5G 

Diagnostic labels are either accepted as a signpost; giving a fuller explanation of child or adult condition/behaviours/symptoms/additional physical or medical needs, sometimes necessary in order to be able to apply for a statement to gain additional support in mainstream schools, to access special schools or assistance in the community; OR labels seem to trigger negative feedback from those who lack understanding, misguided information, hostility, discrimination in the form of stereotyping, for instance: Aspergers = Rainman/high intelligence/no eye contact OR PDA/PDD-NOS = Naughty child syndrome, strong minded OR Classic = Unable to communicate, lack of emotions. 

I have worked in main stream schools, some who have worked hard to strive for inclusion of all types of children with additional educational needs. Sometimes with a successful outcome, but more times I witnessed inclusion not working positively for not only the child, but impacting on other children in the classroom, stressed teachers, and further distress on the family when the school placement breaks down. 

Trouble with grouping the large spectrum of autism under the one umbrella, is that a child with a diagnosis of ASD may be completely different from another child with ASD and will require different strategies in order to meet their differing needs.

My concerns are, and I give an example of a teacher (from either mainsteam or special needs school) with two children in her class, one is a girl and one is a boy, both have a diagnosis of ASD. The teacher recognises some stereotypical signs in the boy which she decides is probably Aspergers, but the girl behaves very differently from the boy, and struggles to engage in class, is disruptive and appears very defiant, the teacher decides that this girl probably isn’t ASD (after-all she gives eye contact) – UNLESS the teacher has full training of ALL of the categories and sub-categories of autism, she will quite naturally make up her own mind as to who is really autistic and who is simply being naughty, regardless of the child’s diagnosis or requirements of statement.

Many teachers in mainstream schools have too many pressures already placed upon them, with high numbers of children per class, attaining good grades for Ofsted inspections /reports/paperwork/governments on-going changing of exam systems etc. It’s no wonder that so many schools are getting it wrong for so many children with additional needs (I AM NOT SAYING ALL SCHOOLS!)

It saddens me to say, “Without FULL understanding of the autistic spectrum, grouping ASD under one umbrella will cause further confusion and exclusion”.

 

PDA information

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All the PDA information and support can now be found in one place at:

http://www.pdasociety.org.uk

Includes their wonderful resource page at:

http://www.pdasociety.org.uk/resources

Also a link to the educational and handling strategies at:

http://www.pdasociety.org.uk/education/educational-and-handling-guidelines

Formerly known as the PDA Contact Group, the PDA Society aims to offer support, advice and information to anyone involved with an individual with PDA, whether suspected or diagnosed, child or adult.

The PDA Society is a voluntary organisation, overseen by a management committee, each of whom is a parent of a child with PDA.

The PDA Contact Group was originally set up in 1997 to put people with an interest in PDA in touch with each other, which we still do today through our discussion forum. The change in name to the PDA Society is a reflection that we are becoming more than a ‘contact group’ and see ourselves as the voice for PDA, running awareness campaigns and sharing information.

Objectives include:

to raise awareness and understanding about the condition
to signpost people towards gaining a diagnosis
providing a telephone support line
sending people information through email or post about PDA
putting families in touch with each other locally
imparting good quality information about the condition as new research comes out
and providing people with information to set up their own local support groups.
We will fund these objectives through direct donations to the group, proceeds from awareness days, and any funding we manage to secure through grants/awards. We aim to become a registered charity in the future to be able to further those aims. In 2013 we were successful in obtaining a Big Lottery Fund grant to fund our Awareness Matters campaign, which included the production of this web site.