Do you live outside of the UK?

Even in the UK awareness, assessment and diagnosis of PDA is still very much a post code lottery.  The work of Phil Christie and his colleagues has greatly improved awareness of PDA among professionals and recent published research has given the condition more credibility.  This has also been given a massive boost by the recent changes made by the National Autistic Society to officially class PDA as an Autism Spectrum Condition (ASC). A massive surge of parent awareness has also had a significant effect on PDA Awareness with many parents seeking to make inroads with their own local authorities to assess and diagnose this condition.

In other parts of the world parents are not as fortunate as we are in the UK which must make their journey even doubly hard because the options of what to do and how to proceed forward are so limited.  Outside of the UK parents may find that there are simply no services available at all re assessment, diagnosis and support.

So what can you do if you live outside of the UK and how can you proceed forward.

Diagnosis

It may still be worth trying to present the concept of PDA and how this cluster of symptoms accurately reflect your child’s profile to any professionals involved with your child.  You could say that although you understand that PDA is not currently in a diagnostic manual would it be possible for them to consider an assessment of an Autism Spectrum Condition (ASC), with a view to include a reference to PDA, demand avoidance or PDA strategies.  This description would still be within the realms of the DSMV diagnostic manual, which may make a diagnosing clinician feel more comfortable, as illustrated in the links below.

If your child already has a diagnosis of ASC then you could request that the diagnosis be refined to include a reference to PDA, demand avoidance or PDA strategies. Again this description would still be within the realms of the DSMV.

National Autistic Society – ASD Profiles and Classifications

http://www.pdasociety.org.uk/families/diagnosing-pda/possible-outcomes-of-assessment

Evidence to support your claims

As in the UK it may be helpful to print off the diagnostic criteria for PDA and write a few points on each diagnostic criteria about how your child exhibits certain features of PDA.

http://www.pdasociety.org.uk/what-is-PDA/diagnostic-criteria

It is also useful if you can provide evidence from someone, other than you, who can support your concerns and has witnessed or experienced the difficulties that you are concerned about.  This person could be a family member (preferably one that does not live with the child), friend, teacher or an out of school activity leader to name but a few.

Include information from the National Autistic Society in order to show that PDA is becoming more widely recognised and accepted by various services and agencies in the UK.

http://www.autism.org.uk/about-autism/introduction/what-is-pathological-demand-avoidance.aspx

It may also be beneficial to print off the PDA Society’s booklet for clinicians http://www.pdasociety.org.uk/resources/awareness-matters-booklet

Finally it may be a good idea to highlight that although PDA is an Autism Spectrum Condition and that individuals with PDA do present with ‘Autistic Like Traits’ that these traits can often be atypical to what may traditionally be seen in an individual with a more typical presentation

The differences between PDA and a typical presentation of ASC

Point out that it is well documented in many publications that the diagnosis of PDA and the application of strategies early on is of paramount importance to the child’s long term prognosis both within education and at home.

If you manage to engage interest from any of the professionals involved with your child and they wish to learn more the following service may be able to offer professional advice and support either by phone or online. Phil Christie collaborates with other professionals in this service and he is the leading expert within the field of PDA.

http://www.autismassociates.co.uk/

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, even in the UK, 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 and joining support groups.

Home

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?

Blog post illustrating how I implemented PDA strategies with my daughter.  These strategies may seem as if they are geared towards younger children but the basic principles can still apply to older children.  With maturing years the strategies may need adapting and tweaking but they are often a good starting point.

Beginning to Build a Framework of Strategies

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 and there are currently support groups for USA, Australia, Spain, Denmark, Italy and New Zealand.

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

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.

There is a charity that has been set up in America to raise awareness about PDA which may be worth looking into if you live in the USA. http://www.pdamatters.org/what-is-pda/

Tania Marshal is an experienced clinician based in Australia who can offer assessments via skype.  However it may be worth checking if your local services are likely to accept a diagnosis obtained in this manner prior to spending any money.

The following website has been set up to spread awareness of PDA in Spain.

Information about PDA that has been translated into the German Language

For more advice on PDA please view 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.
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4 Responses to Do you live outside of the UK?

  1. Thank Jane for this fantastic post. This will help lots of families outside the UK. Please let me mention my website http://www.autismo-pda.com where people can find lots of information about PDA in Spanish.
    Thank you,
    Rocio

    Like

    • janesherwin says:

      You are very welcome Rocia, I have provided a link to your website on the post. It is near the bottom and reads like this ‘The following website has been set up to spread awareness of PDA in Spain.’ If you click on Spain it links through to your webpage. I will also put your site on my blogroll 🙂

      Like

  2. Sarah Dobbs says:

    My son is 5, We live in Ireland. I’m dreading what I’m facing here. I’m relieved to find answers but i know we have a long hard road ahead. I identify with your feelings of not being able to cope. its nice to know there is hope.

    Like

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