An open letter to a parent or carer who suspects PDA (pathological demand avoidance)
On the back of the wee photoshoot that Boo (Matilda) and I did this week, I’ve had DM’s from parents who suspect autism. I’ve replied to you all now, I think, please message me if not.
My open letter to parents who think their child may have autism. Specifically PDA (pathological demand avoidance)
This is actually one of the letters I have sent to a parent who suspects PDA, who is a parent of a 4 years old and who is having issues with being obsessed and not being able to leave the mother but dismissive and not wanting to be with her Daddy, which is a real commonality with autism, specifically this kind.
I hope it helps
Firstly we noticed that Matilda was different but not in the same way and maybe not quite as young as your chlid. She was a very calm little girl and didn’t really tantrum until she was slightly older, but then it all came crashing down quite quickly.
• If you have noticed that XXX is different at such an early stage. THIS IS MASSIVELY POSITIVE.
• You’ll have to be really brave and be prepared to fight for XXX. You will have this in droves because she/he your flesh and blood, but it will be difficult sometimes to relate to XXX, if indeed PDA is what XXX has.
• You need to see a specialist as soon as possible as right now you are treading water diagnostically speaking.
• Recently I attended a PDA conference I listened to several people speak, by far and away the best, was a woman called Ruth Fidler. I am not sure she see’s anyone any more though, for assessments I mean.
• However, I did listen to a woman called Judy Eaton speak and she was very good. She does do assessments and really interestingly and great for you, is that the first of those is over Skype.
• I highly recommend contacting them, you may require a referral from your GP, but get in touch with them and find out.
• ‘Can I tell you about Pathological Demand Avoidance’ and ‘Understanding PDA’ are both great books.
For the short term my advice would be this
• Assume you have the diagnosis and tweak the way you are with XXX. You will have to do this as a family. It doesn’t work if only one of you does this.
• XXX will understand better visually rather than verbally- try showing her/him what you would like them to do
• Use indirect language if you can or put the question to the whole room “who is ready for breakfast, eggs on toast or cereal, anyone?” You’ve not demanded anything of XXX, you’ve just asked a generic question.
• Talk to ‘yourself’ - for example if you’d like XXX to put shoes on or clothes or eat or any daily task “ I wonder what shoes XXX will put on today?” I talk to the dog for example! “Bueller- Matilda looks tired and looks like she needs some space, I feel like that when I am tired Bueller, lets give her some space” So basically I am taking away the necessity for Matilda to tell me how she feels, which is really hard and at the same time, indirectly telling her that its ok want your own space.
• Some good sentence starters
‘ I wonder if we can….’
‘Lets see how we can make this work….’
‘Who do you think could help us today…’
‘Its time for you to…'
‘You’ve got to…”
‘You need to….’
• Star charts - these are great for younger kids. All I would say is, don’t chart the bad stuff, self esteem is a massive issue for different kids, if XXX has not had a great day, just don’t give her/him a star. Avoid putting a big Red Cross, XXX will just feel rubbish but won’t understand why.
• Imagine XXX is younger than they are. Maturity wise, Matilda is approx 2 years behind, So imagine XXX is a giant toddler. Without the ability to understand why people are getting cross with her/him for behaviour they genuinely cannot control.
• These tantrums/melt downs are panic attacks really. Something that happens to them, not something they are able to control.
• The issue for all parents of kids with additional needs is that we have to sift out the (ASD/PDA/ADD) whatever it may be from the just regular bad behaviour.
• After the meltdowns is XXX calmer? Can you explain to XXX that what she/he did made you sad and that you know that XXX is so kind and and such a good girl/boy etc, so you are not putting the consensus on XXX, that it's the physical behaviour thats the problem, not her/him.
• That said its VERY IMPORTANT to have non negotiable rules. It’s just that if and when she/he breaks these, you will have to deal with her/his differently to her/his siblings. This is very challenging.
• Re her relationship with her/his Dad. Children will cling to where they feel most safe, double that for kids who are different. It’s not that XXX doesn’t feel safe or have feelings for her/his Daddy, but you are her/his translator to the world, which XXX needs more than ever. Thats all. This will change eventually but it will take resilience, time and a great deal of input from your partner.
• Can he start by doing one thing with her/him every week? For Will and Matilda it was swimming. He starting taking her every week, she then associated him with this so would ONLY ask Daddy to take her. Is there just one thing only Daddy and XXX could do?
• Its hard for them, Will found it and continues to find it really difficult. But XXX sees Daddy as superfluous right now, its NOT personal. Although I know if feels like it. Its just that he’s not you.
• Re leaving the house - give XXX a choice. Rather than saying ‘XXX we are leaving get in the car’ Maybe try ‘Which side of the car do you want to sit on XXX?’ You’ve not asked XXX to leave, that has just been the assumption. But you’ve given XXX what XXX will think of as control by giving her/him seat choice!
• Things only last so long, this tact may only last a week, 3 days, less, (never get rid of tactic, just shelve it for use again later on) but you’ll become better and more savvy in thinking about ways to get XXX out the house, to bed, spending time with Daddy etc.
• Re bed time - try moving her/his bed. I know that sounds odd. For Matilda at one stage we put her mattress on the floor. Weirdly, different kids often feel more grounded/safer on the floor. You can move it around the room when XXX gets bored of it in one corner. Make this room a haven of calm and a positive place for her to be.
• Whilst I am on that - an exit space. They all NEED an exit space. A little tent that only XXX can go in. Cover with blankets, fill with fairly lights, soft fleeces, ‘XXX’s Space' they can invite you in, but you mustn’t just go in. They can fill it with the toys that they wish.
One more thing, Matilda has been gluten and dairy free for 2 years. It has definitely changed the way she behaves. The younger the child the easier this is to start, but this absolutely has to be your decision based on your own research into this.
Vitamins Omega 3 really important and Vitamin D to start with, but please check the packet/google for dose for your child’s age and height and weight as I wouldn’t know where to start with that!
Ok thats all for now!!
You’re doing everything right, you’re not alone and XXX will be ok because she/he has you. Knowledge is power, keep finding out all you can. You will meet many specialists on your journey but remember NO ONE KNOWS YOUR BABY LIKE YOU DO.
It won't always feel as hard as it does today.