Looks like the dx is not going to be what I thought and I'm struggling

[Desperatelyseekingsupport]

After years of trying to get a dx it now looks like we're close to getting one. However, I had suspected it to be HFA/AS and now told it is more likely to be PDA. On the plus side this would explain why ASD strategies that school have been following have not been working. My concern is that the sm review is due and I already feel (maybe mistakenly) that school weren't keen on having him there. He has been excluded and has the threat of permanent exclusion if any further incidents occur. He also has only been attending for the statemented hours so we need him to attend full time. Does anyone have experience of PDA and how it affects statemented hours. Not much information out there but from what I can gather most children need high levels of support. I am really worrying that if school won't have him we have very little time to arrange another school for next year. The CP and EP both have knowledge of PDA which helps.

I know it doesn't seem so at the moment, but you are one of the fortunate ones if you actually do get a dx of PDA... there is still ongoing debate around the condition! Meaning it is extremely difficult to get a dx ithout paying privately.

I know there is also a lots of negatives out there regarding PDA... but try to remain positive that a dx is a positve step nearer to getting your ds the help he will definatley need.

My ds (4.4) has a dx of ASD since he was 3.6, but we know (parents and those working with him) he "fits", PDA a lot of the time also..It was actually a specialist teacher that first raised the subject with me, due to his extreme demand avioidance and very challenging behaviour. Me... well I'm still on the fence, a part of me still thinks the demand avoidance is just part of his ASD. Anyway I digress!

My take for what's it worth is that the label is important, yes, but what's more important is finding the right strategies that work with your child, both at home and school. So whilst I accept tht he fits Autism too, his school are open to working with him and finding teaching methods that fit him. I appreciate that it's not the case at all schools.

If you haven't already found the main support board it's here,

ccgi.pdacontact.org.uk/forum/index.php

Also this is definately worth a read,

www.amazon.co.uk/Understanding-Pathological-Avoidance-Syndrome-Children/dp/1849050740

Forgot to convert links!

www.amazon.co.uk/Understanding-Pathological-Avoidance-Syndrome-Children/dp/1849050740

ccgi.pdacontact.org.uk/forum/index.php

Thanks baboos I have ordered the book already and am contacting a charity that may be able to supply practical and educational advice and support. It's all so stressful. I just wish we had a dx when he was younger as I know it's better to use strategies then not when they're almost teenagers

I understand... but please don't despair, you can start now and help your ds, so don't focus on the past, as there is nothing to be gained from that.

I was (still am) very worried for my ds's future with ASD, but when PDA was bandied about it really freaked me out as eveything I read was pointing to a very difficult future for him, but since we have started different strategies we are seeing, albeit small, improvements.

My advice would be to read anything and everything you can on PDA, the forum is fab for this.

With regards to school, if they are not keen on having him there, they won't be open to trying new thing with him, so probably best for him, and you, that you find him a new school.

I know it all seems overwhelming... but you are the only one that can help him, he needs you to fight his corner no matter how tough it gets. We are all a lot tougher than we give ourselves credit for.

When I'm having a "moment" I find if I have a good wail, get it out of my system I can get my game face on again. Not suugesting you do the same, but you need to let the depair go, and get on with the fight.

My friend's son with PDA has struggled through mainstream for several years and now is on verge of exclusion. She is now trying to get him into an independent HFA/AS secondary school.
You may want to see if anything similar near you rather than have him moved to something else which will not meet need.

ASD strategies followed by many schools don't work for children with ASD.

Just so you know!

Agree with Star. Every child is different and a lot of schools assume their strategies work for all.

Also with DS what works for one week wont necessarily work for the second. Its all trial and error.

Along with the strategies there also has to be a measure of flexibility and understanding. Routine is important and rules are important and most children need this, but its knowing and recognising when and where to pick your battles and when they have pushed to far and where to draw the line on that pushing/encouragement to avoid or prevent anxiety and possible meltdowns.

That is where a lot of schools/teachers fail. Not just with ASD children either.

If you feel negative about that school then start looking elsewhere and visiting schools asap :)