Mum of a boy with Asperger diagnosis - although I believe he actually has PDA

jamaicanbluetaz

I am a Mum of a boy with Asperger diagnosis - although I believe he actually has PDA, however there is nowhere local that will recognise or diagnose that at present.  My son is nearly 15 and I have home educated since the end of year 6 due to his struggles and meltdowns before and after school.  I also have an ASD diagnosis.  I am married - 21 years - and very stressed most of the time.  I look forward to reading and chatting with you.

JennysDad

Hello @jamaicanbluetaz and welcome to the community! Very good to have you 'aboard'.
You will find a lot of people on here who are on, or who have a child/children who are on the spectrum, so there should be plenty of people to talk to. My own experience comes from my late daughter's having had cerebral palsy, among other things, but I have spent the best part of a decade working as a Learning Support Assistant in a High School, supporting AS children. Apart from anything else, this means I can probably guess why you focused on home education 
So here we are, listening, ready to help in any way that we can, so please talk to us, and don't hesitate to ask any questions.
You'll find plenty of posts and discussions about ASD - this link will take you to some of them https://community.scope.org.uk/categories/learning-disabilities-and-autism and we have an ASD advisor in the team too.
Please have a look around (the Search box at the top of the page is useful) and let us know how you get on
Really looking forward to getting to know you,
Richard

ParentingAdvisorVikki

Hi @jamaicanbluetaz

In the uk PDA comes under the autistic spectrum umbrella, and isn't classed as a separate disorder, similar to the classification of sensory processing disorder, which is specified as sensory processing difficulties for anyone with ASD. 

I would suggest that if he is displaying PDA issues they would be part and parcel of his ASD however you can ask for the PDA issues to be assessed separately. 

Here is a resource for you to have a look at. 

jamaicanbluetaz

Wow, thank you for that.  I only found out about PDA in the last 8 months - long after the Asperger diagnosis - however I do think being able to add 'PDA profile' or something would be helpful in the future.

ParentingAdvisorVikki

Does he have an EHCP or is he under the paediatrician still? They would be your best calls to start with. It is worth calling the secretary of the consultant he is under, to see if you can get in there with your concerns?

jamaicanbluetaz

He has never been under a consultant except for the asd assessment, then we were 'signed off' and left to it.  Now hormones are playing a major part in life as well as Gender variation he is under camhs but they really are not actually helping with anything.  He sees a support worker at camhs every fortnight for 'counselling' but comes out telling me it was a waste of time and the support worker isn't very forthcoming about anything.  Denis is complex and there seems to be a lot going on in there but I don't think our camhs has the expertise or the funding to really get in there an help him effectively.  After an overdose they changed our support worker and it looked like things were going to happen but if I mention PDA at all they just give me that look and it isn't diagnosed in this area.  He doesn't have an EHCP and I don't think it will really help anything because we home educate - although I now have refusal to do any formal work so nothing remotely academic is being achieved at the moment which is worrying.

ParentingAdvisorVikki

I’d ask for a re-referral to a consultant peadiatrician. EHCP covers health care as well so could benefit. 
Have you looked at external organisations to help with the Gender Variation issues?
 

jamaicanbluetaz

On the waiting list for Tavistock Clinic but the wait time has just increased to 12 months from referral so it's going to be a while yet.  Will as GP about re-referral but she usually says speak to camhs - never ending circle.

JennysDad

Hi @jamaicanbluetaz
Having 'spoken' to you earlier I just wanted to say hello again and wish you the best. Should you feel like a chat or a rant, don't hesitate.
Warmest best wishes,
Richard