Beginning on Your Journey with PDA

Many parents can often be desperate for a diagnosis often thinking that a diagnosis will bring support.  Well a diagnosis can open up doors for support within education and social services.  However when it comes to the day to day issues that arise when you are living with a child with PDA, support from professionals can be sparse at best and non existent at worst.

Beginning your journey with PDA can be overwhelming for many parents.  Where to start and what to read?  Unlike a few years ago the internet is full of information on PDA and it really can be mind-blowing. Therefore, for many parents, the support often starts from developing their own knowledge and by joining parent support groups.

To further develop your own knowledge research as much as possible on PDA so that you, the parent, become the expert on this condition.  Combine that expertise with the knowledge of your child and you will soon begin to develop a unique and individually tailored framework of strategies.  You can achieve this by reading, watching You Tube clips, joining support groups and attending courses or workshops.

What you will ultimately be trying to achieve is to provide your child with a social environment that allows your child to feel in control.  An environment that allows your child to thrive and be the best that he or she can be.  In the same way that a parent may need to make adaptations in the home for a physically disabled child we also need to make adaptations for our children with PDA.

This can be achieved by reducing demands, disguising demands and presenting demands in an indirect way.  Identify any triggers that cause distress and then either remove the trigger or think of a way around that trigger in order to reduce the anxiety.  Pick your battles and carefully decide which things are really important and which things can be negotiated or removed altogether. Even non negotiable boundaries may need to be disguised, blamed on a higher power or presented in a non direct manner. You may also need to identify and address any sensory issues that your child may have.

Possible Triggers

  • Being told what to do
  • Other people not doing what he wants them to do
  • Not being in control of a situation
  • Sensory issues
  • Personal hygiene
  • Transitions e.g. leaving somewhere to go to somewhere else and a pleasant activity coming to an end
  • Bedtime
  • Sleep

The following information should help you address all of these matters.

Useful Websites Packed with Information on PDA

The PDA Society

The PDA Resource

Useful Reading

The three published books on PDA

Understanding PDA in Children is an excellent book by P. Chrisite, R.Fidler, Zara Healy and Margo Duncan.  It offers insight, strategies, knowledge and lots of helpful information surrounding education.

My Daughter is Not Naughty is my parental account of living with PDA which also contains a lot of strategies and advice around specific areas of difficulty.

Can I Tell You About PDA by P. Christie and R. Fidler is an excellent starter book to learn the basics about PDA.  It is also a wonderful resource for family members and siblings.

Don’t have time to read a full book then how about some of these resources?

Strategies by the PDA Society are also full of good and useful advice. PDA Society Strategies

Extremely insightful resource on handling meltdowns. Managing Meltdowns by the PDA Society

Excellent document illustrating a different style of communication to use with individuals with PDA.

http://www.autismwestmidlands.org.uk/upload/pdf_files/1424963220_PDA2%20copy.pdf

Excellent website that helps you to identify and appropriately treat any possible sensory issues. Sensory Processing Disorder

Useful Videos

The You Tube videos made by Neville Starnes are excellent and provide information about PDA and strategies.

https://www.youtube.com/channel/UC6m8JcNEqX6e-2uBHE25BFw

Support Groups

Many parents find the many facebook parent support groups extremely useful and supportive.  A concise list of groups can be found here. http://www.pdasociety.org.uk/resources/external-links/blogsandfacebookgroups

The PDA Society also have a discussion forum which may be useful to join in order to chat with other parents but in a more anonymous fashion. http://www.pdasociety.org.uk/forum

The following services offer parent workshops and training but you would need to contact them directly to find out any details of forthcoming events.

http://www.help4psychology.co.uk/training_courses.html

http://sidebysidecoaching.co.uk/

http://www.autismeastmidlands.org.uk/

http://www.autismwestmidlands.org.uk/aboutus/event_detail/5628b9c981be5

http://www.positiveautismsupportandtraining.co.uk/

http://www.autism.org.uk/

http://www.simplymisunderstood.co.uk/

http://www.positiveautismsupportandtraining.co.uk/

The National Autistic Society

One Stop Shop – Lanarkshire

The PDA Society also offer a 6 week parenting workshop in different areas of the country and try to keep members informed of this event and others on their webpage and facebook page.

PDA Society parent workshops 2016

http://www.pdasociety.org.uk/blog/category/coaching-and-training

https://www.facebook.com/thepdasociety/?fref=ts

If you wish to receive details of any forthcoming PDA Society 6 week workshops then please get in touch with the PDA Society stating your email, name and address and they will be able to place you on their email list.

Alternatively you may like some one to one support either via the telephone or email.  The PDA Society offer this service through their enquiry line.

The following organisations offer consultancy and training for professionals and both involve the expertise of Phil Christie and Ruth Fidler. Parents may be able to privately commission these services in order to provide advice and consultancy with professionals working with their child.

Autism Associates

Complex autism, interactive approaches and emotional well being

I understand how daunting this may all seem right now, just start with one thing and then try to work your way through.  Time for research when you have a child with PDA is certainly not easy at all.  Just do what you can when you can.

It is also important to remember that PDA is a spectrum condition meaning that some individuals will be more severely affected by their PDA than others.  Some individuals may greatly benefit from small adaptations but for others rather drastic changes may need to be made.  There really is no right or wrong or any set way to do things.  It is about learning as much as you can.  Then taking everything that you have learned and individually tailoring things to your, own and unique, family situation and child.

For more information about PDA please visit The PDA Society and The PDA Resource

 

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About janesherwin

I am the parent of a child diagnosed with Pathological Demand Avoidance Syndrome. My hopes and aims are to raise awareness of this complex Autism Spectrum Condition presentation.
This entry was posted in 3. Strategies, Understanding, Resources, Discussion and More, Beginning your journey with PDA, Uncategorized and tagged , , , , , . Bookmark the permalink.

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