Published on 12, July, 2020
Our son has just (today) been diagnosed with ASD. He has many behavioral characteristics associated with PDA and I was wondering if anyone has any advice as to what we should do next regarding his diagnosis. If he was to have PDA, this would seem to suggest a different management approach would be necessary within school. He has previously been excluded from school (pre-diagnosis - for persistent defiance!). However has not been back in school full-time since May due to restricted eating/obsessive exercising and a lengthy hospital admission which occured as a result of this (a bit like annorexia but because of rigid thinking/obsession and adherence to routines in the first place). He is scheduled for a phased return to school in September as he is physically much improved but I am concerned about how we ensure he is adequately supported if he is seen to have ASD rather than PDA (if the latter really is the issue). I was told today that we would have one more F/up by the Community Peadiarician, he has been discharged from hospital Eating Disorders Services athough he is still under the care of Community Eating Disorders Services. I'm just not sure who we need to work this out for us so we can put the right support in place for him at school and so that school are aware (school are now much more supportive and aware that he isn't just 'deviant' as his hospitalisation was such a crisis point). Any advice or guidance would be very much appreciated.
Hi EMH,
I suspect that your post has been held up in a moderation queue - there are filters that try to catch trolls and the like. There is a feature of this system that forwards the post to other people on the thread so I have received the follwoing in my email.
I hope you get my thanks Recombinantsocks - my responses don't seem to be appearing to any of the posts I thought I had submitted to. Anyway, our psychologist e-mailed today to say that no specific recognition is given under their team to PDA (not in the diagnostic manuals either) but interventions in our locality are instead targeted toward the unique presentation of the individual who sits on the spectrum - we are happy with this as our child is complex and it is indeed his 'uniqueness' that should be supported rather than our clumsy parental efforts to understand hm within a category. We have been offered NVR training which I think will be very helpful to change our approach to 'meltdowns'. We have spent the best part of 12 years immersed in positive reinforcement but to no avail (he really isn't motivated by personal reward or by pleasing others - not on his radar of needs at all, in the nicest way possible - he doesn't actually care nor does he 'want' for much - nice at Xmas time - very brief lists usually comprising of not much more than 'Pink Smarties'!)I hadn't actually thought about intolerances but no, I don't think this is him - he is currently obsessed with pinapple - it is just the way he is and a bit like a previous penchant for eating nothing but beans on toast, I suspect he will move on when he is bored of the taste! Provided he doesn't slip into extreme eating restriction again, which we are now better educated on and more vigilant about, we love him just like this (why we didn't seek a diagnosis earlier). He is interesting and quirky, challenging and heart-meltingly lovely - I am so verry proud to be the mum of my newly diagnosed child with ASD. I read a number of posts on here about how difficult it can be to inform your child of their diagnosis - partially due to his 'factual' nature, he accepted this during his hospital admission when there was lots of discussion as to how we had ended up in the 'disordered eating' pickle in the first place. For him it is just a 'fact', so I guess we are very lucky and blessed in that respect.Thank you again Recombinantsocks.
I hope you get my thanks Recombinantsocks - my responses don't seem to be appearing to any of the posts I thought I had submitted to. Anyway, our psychologist e-mailed today to say that no specific recognition is given under their team to PDA (not in the diagnostic manuals either) but interventions in our locality are instead targeted toward the unique presentation of the individual who sits on the spectrum - we are happy with this as our child is complex and it is indeed his 'uniqueness' that should be supported rather than our clumsy parental efforts to understand hm within a category. We have been offered NVR training which I think will be very helpful to change our approach to 'meltdowns'. We have spent the best part of 12 years immersed in positive reinforcement but to no avail (he really isn't motivated by personal reward or by pleasing others - not on his radar of needs at all, in the nicest way possible - he doesn't actually care nor does he 'want' for much - nice at Xmas time - very brief lists usually comprising of not much more than 'Pink Smarties'!)
I hadn't actually thought about intolerances but no, I don't think this is him - he is currently obsessed with pinapple - it is just the way he is and a bit like a previous penchant for eating nothing but beans on toast, I suspect he will move on when he is bored of the taste! Provided he doesn't slip into extreme eating restriction again, which we are now better educated on and more vigilant about, we love him just like this (why we didn't seek a diagnosis earlier). He is interesting and quirky, challenging and heart-meltingly lovely - I am so verry proud to be the mum of my newly diagnosed child with ASD. I read a number of posts on here about how difficult it can be to inform your child of their diagnosis - partially due to his 'factual' nature, he accepted this during his hospital admission when there was lots of discussion as to how we had ended up in the 'disordered eating' pickle in the first place. For him it is just a 'fact', so I guess we are very lucky and blessed in that respect.
Thank you again Recombinantsocks.
Your post makes me wonder what exactly you mean by positive reinforcement? Could you provide some examples of what it means to you?
I am not a MH specialist so I don't know whether PDA would count as a syndrome or whether it is really just a handy label for some bad behaviours that are acquired by autistic and other people who are struggling.
There are some pages on this site about eating disorders - it is quite common for autistic people to end up with diet problems such as he has - under or over eating and very restricted diets are common.
Beans on toast is a fairly safe thing - plenty of fibre, protein, carbs etc but lacking in the variety that keeps us topped up with vitamins and essentials. Pineapple is potentially a bad thing - the sugar content means that it will attack teeth - dentists are generally not the autistic person's favorite!
I have found that I am intolerant to some tomato types, strawberries and apples. There is a recognised sydrome called pollen fruit syndrome that is an allergy to the natural pesticides in the skins of many fruits. For me it meant that I hated the taste of Granny smith apples and my tongue swells up if I eat these fruites. His preferences may be being driven by taste or reactions like this that mean that some foods are really unpleasant to him. Perhaps you could get him to test some foods with his tongue and then tell you what they taste like - his reactions may be genuine revulsion at some foods and that revulsion may be driven by real reactions.