Annoyed with other mums telling me DC has not got Aspergers or ADHD

[Bing0wings]

DC has been diagnosed with sensory problems. She has had various problems including daytime toilet training taking 3.5 years. had 3 teachers and SENCO who have said there is a bit of a problem. NHS Autism team want to do the ADOS test on her to check as her social skills are lacking. Despite this I still get friends and other Mums telling me she hasn't got Aspergers cos 'so and so has got it and she's not like that' or 'she looks normal' or 'I wouldn't want her to get a serious label' or 'oh they have to label everything these days.' Really annoys me ! Some people are brilliant and supportive, but I just don't understand why some parents are so judgmental and feel they are qualified to diagnose my child. It minimises everything we've been through and shuts down the conversation. It's not reassuring, it's annoying.

Thumb, my ds has PDA, it's difficult finding someone in this country who will listen!
Good luck to your friend.

We've had so many negative comments about him being a boy and needing to run, he needs a good smack, he needs us to get really cross! he can control it at school so he should be controlling it at home!
It's wearing, unsupportive and isolating.

Get used to it. It won't stop if/when she gets diagnosed.

oh and then you get the playground know it all who tells you you ought to do this or that. and just make them. yeah and that will go really well

I hope that it becomes more widely recognised, LeChien - it's quite distinctive when you realise what you're seeing, I think! But not unless you know about it to start with.

I find it mildly disconcerting that you can't even type PDA into google search to find anything about it, because a bunch of other stuff comes up - you need to type in the full name of it to get anywhere.

I think there can be a feeling that if somebody can pass for NT, they should avoid an ASD diagnosis even if that requires huge amounts of paddling under the surface.

In real life that would be like pretending you weren't partially sighted because you have enough coping strategies.

Apologies for my ignorance but What is PDA ?

Yup. Ds has both asd and adhd. We still get the comments above! In fact whilst going through the dx and the fights with the school and then dealing with the dx once we got it, I lost quite a few friends. They attacked me saying they couldn't share with me their inanities because I had withdrawn a bit to process the fact that my child had just been dx with a life long disability and had to get it straight in my head first before sharing my thoughts with the world!

It's pathalogical demand avoidance. My son fits the profile. Camhs and the paediatrician agree he fits the profile but in Bristol they won't diagnose it. Incredibly frustrating. My son is so much better in the summer holidays because the demands on him drop to almost zero. I love the summer holidays for this reason. Come term time again I won't be able to get him to school.

Bing - pathological demand avoidance.
A form of autism, but generally with better surface social skills so the child tends to be thought of as manipulative and defiant.
Ds has extremely high anxiety levels which show as anger and violence, but hides it all at school.

Ah yes rings a bell. I think I've seen a clip on the tele about a child with PDA. Not nice

garlic not surprised at you withdrawing. I have done too. Other child also has different problems. Last few years has seen me go from out going very social bod to complete withdrawal as i was physically and emotionally knackered. Getting bit easier now and resurfacing with friends that are supportive.

DH and I became very isolated and even after DS2 was diagnosed with Aspergers at 12 we were very careful about who we spoke to. Grandparents can be the worst because they don't want their precious grandchild to be 'different'.
You know what they say 'If you've met one child with autism you've met one child with autism'. Everyone experiences it in their own way.

"They label everything these days". Good, good that they label it. Then the kids can get additional support. I remember when my cousin's kid got diagnosed with Asperger's and the other side of the family were all like "oh I don't know where all this nonsense comes from, what is that anyway, it didn't come from our side of the family" despite the wee guy having an uncle who was quiet and reserved to the point of living with his parents at 40 and being too shy for a job, spending his days playing computer games instead. Uhuh, there's no Aspergers in your family...