Could this be a symptom of PDA?

[IfIWasABirdIdFlyIn2ACeilingFan]

I’m trying to get DS 9 assessed. I strongly suspect he has PDA, however I’m in NI and it seems no-one even knows this exists so they are saying he doesn’t have autism because he doesn’t present with autistic traits. He ticks so many of the PDA boxes but the consultant Paed who is deciding whether to refer for ASD assessment says he has to tick the boxes for autism itself and as he doesn’t, (things like he gives eye contact. FGS!) she is unlikely to refer.

On to the point. DS is fecally incontinent. He has never fully toilet trained. (He got the hang of peeing in the toilet straight away but no joy with pops) He was in pull ups until a year ago when he got very self conscious and now will only wear normal pants, which he soils on a a few times a day. We’ve been to the GP numerous times and seen a paediatrician. Each time he is constipated and they prescribe movicol or lactulose. He won’t take movical and we have sporadic success with him taking the lactulose. I’ve done charts, treats, toys, routines on a whiteboard. He will go along with them for a day or two at most and then total refusal. Very, very rarely he will go to the toilet of his own free will and do a poo. Most times he soils his pants and/or goes in the bath. I encourage him constantly through the day to go to the bathroom. He always resists. Sometimes he will give in and go but most times he refuses. He often denies he has soiled his pants, even when I say that I can smell it, he tells me I can’t. He would carry on with his pants soiled if I didn’t make him change. When he soils in school he won’t go and clean himself. He will stay like that all day until I collect him. He won’t take spare pants to school either. He will not discuss it. He knows it’s not normal, he knows that people can smell poo from him.

For probably far too long I was treating this as a separate issue from his behavioural issues but as time has gone on and I’ve learned more about PDA I’m starting to think this could be part of the whole picture.

Any ideas? Do you think this could be another symptom/sign?

No advice but im right there with you..my son is 7..Asd..wears pull ups for a poo and he will pull down his trousers in public and shout for a nappy! Ive tried absolutely everything..nothing works..i hope someone comes along soon with advice..My son is a very tall 7year old also and getting the bloody pull up on and off is getting troublesome

Oh thank you for responding milk! My son doesn’t let me help him get changed anymore. Understandable as he is getting older. He won’t draw any attention at all to the fact he has had done a poo, which I suppose is a blessing in a way as people aren’t hearing about it in public but on the other hand he doesn’t alert me so people can smell it before I find out. And if we are out at the park or doing something fun he will refuse to leave to get changed.

It could be behavioural but as you've found out bowel issues are common with autism as the feeling normally isn't there or doesn't register due to sensory problems.
It's more than likely the actual pooing is a physical effect of being on the spectrum but the not wanting to get changed and dissociating from it is behavioural from the PDA side of things, if that makes sense.
He does it and the stress and 'want' (a demand) of getting change makes him dissociate due to the PDA.

Yes that does make total sense, captain. Thank you. It baffles me that all these professionals that have seen him can’t connect the dots and its left to me who has zero experience of ASD to spot signs and prove he needs to be assessed. I’ve decided to keep a diary of all this stuff because I can’t recall all these details when I’m sitting in an appointment. Thanks for the help.

You are welcome, this site is, at times, better than the "professional" as we are the ones who live with it.

Totally agree! I am in a couple of local FB PDA groups too but I’m hesitant about posting on FB for advice as people could identify us and I don’t like the idea of people knowing stuff like this about my son. I know a lot of them will have similar issues too though so I stay and read. It’s really helpful.

PDA doesn't feature in the DSM5 so it cannot be officially diagnosed. Children with these traits, are diagnosed as autistic in fact in NI professionals rarely diagnose Aspergers anymore instead diagnosing with autism. You need to push for an autism diagnosis when speaking to the paediatrician not PDA as a result of this. Are you in a position to pay for private assessment? The waiting list for asd assessment is very long and sensations ni is very good. My dd was assessed there and the staff seemed much more in tune with her less than classic presentation.

Thanks for responding mum

My mum has offered to pay for a private assessment and when I enquiried with Dr Cummings at the Ulster independent clinic she said that private assessments were not recognised in the south eastern trust where I am so we didn’t go ahead with it.

Dr Cummings definitely won't diagnose pda I asked her about it and she told me it isn't a recognised diagnosis separate to autism. The best thing to do is get your son on the waiting list for diagnosis through the nhs the list is so long that he may be assessed by sensations anyway as they are managing the nhs backlog in Belfast. You could also approach the seelb the educational psychologists there are great.

Just wondering have you confirmed with the seelb that they won't accept a private assessment from sensations specifically. If they are helping to clear the nhs waiting list and then those children's needs are being recognised then why not your son? If you can afford to avoid the wait.

No I haven’t. I checked with his school about the private diagnosis after speaking with Dr Cummings and they said the trust doesn’t accept them but I can check about sensations because if as you say they are dealing with the NHS backlog then the trust has to be accepting their diagnoses!

The paediatrician saw him in April and wasn’t going to speak to the school and ed psych about whether they thought he was on the spectrum and if yes then she would refer. I know both school and ed psych don’t think he is so I am assuming she won’t refer. As she doesn’t seem to think he is either.

I’ll speak to the trust to confirm the situation WRT private Dx from sensations. Thanks mum

Sorry, she was going to speak to the school.

I first asked about autism when dd was three and she wasn't diagnosed until she was 10. Initially they ruled it out because creative and had imagination and good eye contact. However they weren't seeing that the imaginative play was scripted and mimicked and that the eye contact was only ever on her terms. At sensations they seemed to have more a more nuanced assessment. Recognising her manipulative behaviours and inability to practice theory of minds. I'm also wondering if you ds is having issues with toileting are the elb not involved already?

They’re hoping to have a classroom assistant for him starting this term. We had to move him to a new school last September as the previous school was just utterly useless and fobbed me off for years making out he was just a naughty child. I’m still really very angry with how he was treated and how long he was left. They were terrible with keeping me informed about his behaviours and getting the ed psych to see him. Two years of waiting and they just said he was on the list. 5 weeks into the new school and they had him seen by her. And classroom assistant applied for.

Just an idea: if I were you I would go on with the private assessment at sensations NI then your son will have been properly assessed with no guess work. If these specialists say no you will no for sure and if they say yes then argue the validity of the report with the seelb. Better to ask forgiveness than permission and all that. At that stage you could always get the law Centre involved.

Yes that sounds like the best plan. Would you be willing to say how much your DDs assessment cost through sensations?

My daughter was part of the nhs backlog. We were on the list for about 18 months. They are very good though, dd was assessed by one person while I answered questions in the next room she was diagnosed that same day. It was fairly straightforward in the end but for me it was just confirming what I had known for years. We do have a family history of autism though which they seemed to take into account in a way that the paediatrician didn't.

Ah right. Thank you so much. You’ve been really helpful.