My kid is weird, but I wouldn't get her tested...

[Nimueh]

Ok, I need to vent.

My DS has spent the last 4 years under CAMHS being assessed for ASD. Recently it was his birthday and he felt like he would enjoy a small party. Thankfully some children could come.

At the party one of the children's parents asked why my child was not eating any food. I responded by saying he didn't really like any of the food on offer. She asked why I had prepared food my son didn't like at his party. I explained that he had chosen the menu himself and was very insistent, he chose foods he knew his friends would enjoy. She kept pushing the issue and I then felt I should explain further and told her that he was currently being assessed for ASD. To which she responded 'Well my child is weird but I wouldn't get her tested'.

AIBU to feel upset by this? Or am I overreacting a bit?

I don't like the use of the word weird. He is not weird, I didn't take him to the Dr because he was weird. He is a little quirky, but I love that about him and wouldn't want him to change. He is awesome. But autism is so much more than being a bit quirky. It's difficult. It's difficult for him and it's difficult for us. It's exhausting. And whilst everyone else's child is enjoying Christmas, mine is under a blanket because there are too many lights and sounds and changes.

I tried to explain some of the issues we face and why it is important he is able to access help. She just proceeded to list all the ways her child was 'weird' and finished every sentence with 'but I wouldn't get her tested'. I stopped the conversation as she obviously didn't understand my point of view. But I feel upset by the whole thing. Do other people share her opinion? Is this a common way of thinking?

I don't think every child who exhibits autistic type behaviour needs 'testing'. If a child is happy, thriving, doing well at school and a bit quirky then great. But if a child is struggling with the daily demands of life then surely as a parent we are duty bound to help.

Ignore her stupid comments.

When DS2 started school, a few parents asked me if I thought their child might have autism like DS2 as they were naughty/liked to spin/talked about their favourite subject/insert own ASD stereotype here. It was very annoying, they didn’t know DS2. They also didn’t have a clue about ASD.

One of the best parties DS2 went to only had jam sandwiches and Greggs sausage rolls, as this was the only thing DS2 and the birthday child would eat.

I think your DS sounds very sweet choosing party food for others and not being bothered to choose his own.

Our eldest is autistic and I resisted for ages about getting him tested because I did not want labels or the 'stigma'. Finally the ed psych who diagnosed him said to me very gently;' He will be given a a label even if you have your head in the sand'.

It might sound strange, but that was the most liberating thing he could have said to me. So,I can understand that the woman you are talking about has some fear and anxiety, and undoubtedly is trying to do her best. She thinks if testing reveals something or other, then it makes it real. By denying, then it is not real.

Weird is good, anyway. Your DS sounds lovely. My boy has major issues, and he's perfect just the way he is.

What a rude woman! I think your DS is really nice to have thought of his friends needs first. That isn't weird, just rather lovely.

please don't dwell on it . She was pushy thoughtless and rude
Concentrate on your lovely son and how considerate it was of him to put his friends first
Did he enjoy his party Nimeuh ?

"Really? Do you not worry you're letting her down by neglecting her obvious needs?"

That's a super retort AllFed.

I'll file it in my 'Replies to people who make ignorant and hurtful comments' folder.

Most of the ones I hear are about not wanting to label a child, where I just mutter 'like a suitcase' and bang on about medical diagnosis not being a label. I need some more eloquent and poignant ones.

oh OP I see where you are coming from here. I've one diagnosed child and one on the pathway.

You are doing nothing wrong in looking for support for your DS and this woman should keep out of it.

She was rude and ignorant, but you can't change people, only your response to them. I have ASC and once upon a time I would have been incredibly hurt and belittled by those types of comments. I choose not to waste my energy trying to explain anything to ignorant people now.

Your ds sounds so lovely and thoughtful

My good friend's DS is on the spectrum and I've seen people say similar things to her and its so cringe worthy BUT I do think that sometimes they are coming from a good place and just being increadibly awkward. Sometimes I think they are trying to be inclusive / minimise friend's ds difference. But of course, in doing that they are negating the actual incredibly difficult struggles the family faces. But really, I don't think that is their intent - they just don't know what to say and their mouths take over

My dd is in a Sen unit at her school in the mornings and mainstream in the afternoons with an EHCP, I had someone recently tell me that the school only thought she has Sen as I had told them that, if I hadn't of mentioned it she would be in a "normal" class.

You're doing your best for your child. If you don't like the word weird that's fine just say so.

DS age 13 verges on the geek side of things and is NT. I've often said that was a weird thing to say / do. His stock reply is 'comes from having a weird mum'. Quirky and weird are synonyms in some dictionaries. She should have left it though and not pushed you.

Sounds like your DS is kind, considerate and has friends. That's the important stuff not some daft woman.

She's not worth a second thought but I agree with PP that your son sounds really mature, considerate and kind to have chosen foods he knew his guests would enjoy.

Well, unpopular as this might be - my kid is "weird" but I wouldn't get her tested.

Our girl does have quite a few traits which could be an indication of ASD. It has crossed our mind more than once that she could be on the spectrum somewhere. It has also been noticed by some of her medical team who asked if we wanted to go for diagnosis. But nothing that happens is unmanageable by us and it doesn't seem to impact on her day to day that much so we have decided not to get her tested. She does have a different disability and to be honest, we have enough to see to with that, without adding another bunch of specialists who actually wouldn't be of much use as, we've got it covered.

Of course, I'm allowed to say that about my child. I'd swing for anyone else who said it! And the other mum was either being judgey, in which case you should definitely limit any time around her in the future, or she was just chatting, trying to connect. Who knows, maybe she was actually trying to reconcile her own thoughts, but she may not have meant anything by it. People sometimes just don't know what to say.

I hear lots of well meant but very ill judged comments about our girl's disability. I just have to remember they mean well, else I'd go nuts.

Honestly if one more person says to me that my ds doesn't "look autistic" I'll scream. Or says "he's not that bad"
They see a small snapshot of his life, they've honestly no idea what troubles we face daily. How much he masks etc.
I just nod, smile and walk off. There's just no point

YANBU to find her comment off. She clearly just doesn't get it. My kids are weird too. I've not failed to get them tested because I don't want to but because I know that weird and needing help aren't the same thing. She clearly can't see beyond the stereotype of people with ASD just being a bit different as opposed to facing real challenges that typical children don't. However YABU for caring what she says. Clearly she doesn't know what she is talking about, or how to behave for that matter.

That's her view. If her daughter was displaying signs of ASD is she really saying that she wouldn't fight to get her tested? It seems that she is only interested in not having her DD labelled which is selfish considering the problems kids on the ASD spectrum can go through at school (and beyond) because of how she thinks it will reflect on her. Sounds like you've done a great job with your son and it's lovely to hear about the way he picked food he thought his friends would like to eat. Sounds a great kid. Sad too, to hear a mother describe her own child as 'weird' btw. Ignore her.

She's a dick.

Unfortunately, you will come across people like this throughout your DS's life. Some will say it from ignorance, others because they think that pointing out that their children have quirks or are weird will reduce your concern. Some you can educate, some it's best to ignore.

PP mentioned they don't get their child tested because they don't want/likd labels. I heard this lots through DS's education. My thoughts now is a diagnosis isnt a label, a diagnosis can help get the child support, a label such as 'weird', 'naughty', 'lazy', 'loud' etc can end up becomming the focus, which can be detrimental to the child and make it harder to access support

Originalfoogirl my son is in year 9 and for a long time I have known he thought differently to others and we've had schools and gp's being utterly useless.
There was a particularly nasty attack on him a few weeks ago at school that has prompted a flurry of activity from the school and an educational psychiatrist assessing him, today I had a meeting with her and she has confirmed she believes he is high functioning ASD and does need the help developing the social skills he's lacking which is resulting in the bullying/attacks from class mates.
We now have to decide if a formal diagnosis is necessary - at this point we're going to focus on her recommendations and only if the school start struggling to meet his needs would we push for this sooner, rather than leaving it to be a personal choice of my sons when he is older.
I actually feel a massive relief from the meeting today, bloody exhausted but relieved that finally someone can give us practical help and support to give him the skills he needs.
People some people are ignorant and will always say things, but they'll say things regardless because he is different a formal diagnosis or label wont change that

Lefthand you are right. I said I was resistant to diagnosis, because of 'labelling' but that was all down to my own fears.

DS' diagnosis has been empowering. It means that I can access support , and it means that I have a framework within which i can research. It means that his school have been able to work with us more closely and adapt to him. Also- we have been able to access amazing support through clubs etc offered by our LA. We have been lucky with that.

If you can access additional support that is brilliant. I do know people who have not pursued a diagnosis because they know no additional support would be provided. I guess as long as your child gets what they need, that is the important thing.

Maybe she was trying to show her sympathy but came out wrong?

AmIaweed
We’re fortunate that our school provides support for her physical disability and some of her problems could be either explained as part of her disability or were managed because they combined with a physical problem. E.g she found the playground very difficult to cope with because of noise and socialisation, but there was also a physical issue with her safety and with coming in to school in the mornings was the same. The solution for the physical problems meant she had an assistant in the playground and was met at the door in the mornings. These helped the social issues so we never had to find support just for that.

When she was 2 and not crawling or walking, I was reluctant to go for diagnosis as I couldn’t see the point. She had physio, and regular consultant visits, which wouldn’t change with a diagnosis. Mr Foo wanted to go for it so that he could explain to people “why” looking at you MIL He won that round so we went for it. Since then it is clear that having the diagnosis is so much easier as it does open up so many more avenues for support. If we didn’t have her other disability, we would probably push for ASD diagnosis.

It sounds like she was looking to have a go and took the opportunity to have a go about a 'label'.