Thread by @Chr1sR0berts

A thread about #PDA #Parenting #Education #CAHMS @PDASociety @YIMAN38111877; @cariadasd; @pdadaduk; @LauraKerbey; @martinimarie; @realdoll03; @PDAParenting; @PdaParents 1/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents Both our children are school-refusing;
Both Autistic - their needs/adjustments at school not being met at/in school;
Daughter has PDA profile. She’s reached crisis, trauma stage of Autistic burnout (we know this *now*) & are reducing all demands; 2/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents But the reducing of demands is complicated by the very different needs of my autistic son;
Daughter finds it increasingly difficult to leave the house;
So we’re here, all the time, no respite. Distressing, hard, overwhelming & burning us out. *ALL* of us, the whole family; 3/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents Receiving zero support from official education/health professionals (*other than from one wonderful man who’s basically helping us in his own - very pressed - time);
Still awaiting assessment from (under-resourced, overworked) local NHS Autism assessment unit for daughter; 4/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents No financial assistance, having to appeal. Also had this experience from CAHMS. Does no one at CAHMS have an understanding of the PDA profile. All their “help” is “behaviour focused”, so it’s all based on neurotypical profiles. It’s all “rewards/punishment” oriented. 5/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents In my experience THIS. DOES. NOT. WORK for autistic (particularly PDA) neurodiverse people;
At the moment, both children are always here at home, and in order to coregulate my daughter, she needs near 100% undiluted attention; 6/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents Even the evenings are difficult. My daughter avoids the demand of sleep. We understand this so we operate a nearly demand-free home environment, but now realise the triggering demand is having to attend school. 7/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents TBH, even though at the moment this is obviously creating problems, we think reducing the demand to attend school, will, after a time, allow her to reach a state of emotional regulation; 8/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents All these demands on us, means my wife & I barely spend any time together. My daughter (nearly 8) sleeps in the bed next to my wife. I sleep elsewhere. We spend perhaps 30-60 mins of the evening together, but sometimes less, & sometimes none at all. Been like this for 5 yrs; 9/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents But self-care is also vital (for us and our children) In order to be the best parents we can be, it’s important to engage in “self-care” to have some respite…but there is none, for my wife or for me; 10/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents Anyway, we hope that reducing - even removing - demands, particularly attending school, should mean, months down the line, her nervous system response (fight/flight, though almost always “fight”) will be less activated; 11/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents Because both children are not attending, their school (non)attendance is being marked as “Unauthorised Absence”, therefore we’ll be in receipt of fines; 12/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents All of this is compounded by PDA being not widely understood or diagnosed. Then you throw in the added (patriarchal) frame that so many of the markers or signifiers of Autism are based on the ways in which boys “present”. 13/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents It’s as if many of the official diagnostic tools for assessing are still based on standard boy presentations/behaviours. They don’t recognise concept of “masking”, that girls are masters of “masking”…until suddenly, having reached crisis/burnout/trauma phase, they’re not! 14/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents Like so much of the medical establishment (and many other elements of society) girls are disadvantaged by patriarchy! 15/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents I know this is sort of howling into a void. But we’re just abandoned. Why is it that there’s almost no help, or the help one can access is not designed for neurodiverse people, and why is the default setting from authorities to deny and refuse? 16/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents Is it because by refusing, Govt/Local authorities rely on parental exhaustion, that parents will just give up the fight (thus Govt/LA save money)? At every stage, in every scenario (education/health) those who are (notionally) there to help, instead put barriers in our way. 17/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents We've repeatedly been told, (for example) “Don’t apply for EHCP, you’ll not get one” Aren’t these services supposed to facilitate and help families? 18/19

@PDASociety @YIMAN38111877 @cariadasd @pdadaduk @LauraKerbey @martinimarie @realdoll03 @PDAParenting @PdaParents The final punchline to this story is that: effective 31st July I’m being made redundant by the university for whom I’ve worked for 17 years! So *if* I cannot get work, then we'll be in danger of losing our house. 19/19 …ends