I am just a Mum so what do I know about the in’s and outs of diagnoses and criteria or why one thing is in a diagnostic manual and something else is not?
I am not a crusader, a radical or a ‘member of a cult’ as I was recently accused of being! I am just a Mum seeking help for her son and feeling compelled to write about PDA to bring attention to it because autistic children are suffering, having breakdowns and being forced out of schools.
My son was unsupported and undiagnosed for years because (according to professionals) he;
- Made too much eye contact
- was too social
- Appeared to cope too well with the world
He was also
- selectively mute
- self harming
- highly anxious in certain situations to the point of a child in a war zone (according to CAMHS)
- In a constant state of fight or flight during term time
- Extremely sensory sensitive
- seemingly had little or no hunger response
I went into looking for help with an open mind, I even asked if it was something I was doing.
I tried every course, strategy, bit of advice I was offered. I was open and honest about my parenting, my past and my current situation. I allowed myself to be critiqued , questioned and judged as I outlined in this previous blog post:
Eventually they concluded nothing was lacking and I am actually down on record as being a ‘exemplary parent’ by more than one agency.
It became clear to me that my son was autistic and not only to me, I even had parents coming up to me in the park assuming my son was already diagnosed. However it was also clear that my son did not present in totally familiar ways to other autistic family members or autistic children and adults I had worked with in the past.
Although each was different as every autistic and non autistic person is, there were threads of similarities that ran through. My son had less of these familiar threads and many additional threads which seemed to be part of his autistic make-up. He seemed far more volatile and unpredictable and far less reassured by routine for example.
Anyway he remained undiagnosed but under the ADOS autism team and without much in the way of support. He began to breakdown in school and was eventually given a full-time one to one teaching assistant and a counsellor once a fortnight but even so it got to the point I could no longer get him in.
I had been in touch with the National Autistic society who were supportive and agreed that the reasons given by the diagnostic team should not exclude my son from a diagnoses of ASD and I was scanning their site for tips on school refusal at my wit’s end when I spotted a link to a description of something called ‘Pathological Demand Avoidance.’ I was so amazed by what I was reading that I ask my Dad who was staying with us at the time to take a look and he said ‘but that is exactly L, why has this never been mentioned?’
I emailed the link on PDA and a letter the National autistic society helped me draft asking why if a diagnoses could not be made why hadn’t a referral? They called me in and diagnosed him with ASD that week. They said they had considered the information on PDA but that it was not something they would diagnosed specifically as it was not in the diagnostic manual but that it came under the ASD umbrella anyway.
Help was not forth coming as a result of the diagnoses however because traditional ASD approaches were used which did not work for my son, there was also a lot of isolating and ‘pushing’ of my son which only made things worse. When I suggested the use of PDA strategies I was accused of medicalising my son. My son ended up out of school as a result of a possible breakdown or extreme autistic burn out caused by the use of the wrong approaches.
I went to a PDA society workshop, for the first time recognised my son in what was being said, and met other parents had experienced this too. I now use what I have learnt there to support my son in home education. He is thriving to such an extent professionals can not believe the change in him. He has recovered, for the most part, from his experiences at school and our relationship has blossomed because he appreciates being understood. He does not self-harm, meltdown or get aggressive as he has no need, his needs are met. He has such a zest for learning and despite dyslexia is working to GCSE levels in some areas and he is not even 12 yet.
If PDA had been recognised then the school would have had to employ tactics suitable for a PDA child, they could of looked it up, they would of taken me seriously, my son may of still been in school. This is why I fight for PDA to be recognised.
I don’t know if it should be a separate diagnoses, seperate presentation in the diagnostic manuals or just part of a rewrite of the autism criteria but there needs to be some sort of shortcut so that schools and professionals know that this child needs this different approach. However there is also a theory (which I agree with as a theory, as I say I am just a mum) that PDA strategies would actually be more affective for all autistic children and that could work too but would mean a massive change of approach and attitude from professionals.
Some of these points are made in this thought-provoking blog by Paula Sanchez, much of which I agree or am at least open-minded to, but I also wonder how this would work in practice?
Stephs Two Girls has also written a wonderful blog piece on PDA and the difference between it and other conditions/presentations: