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.

What a lovely kind thoughtful boy your son is

YANBU I would have been upset at her choice of words too. My son is 6 now and was diagnosed with ASD a year ago. Yes he has his little quirks and things but he is lovely and sweet and funny. In fact apart from sometimes being a bit lonely and the shocking meltdowns the only real downside to his autism is other people’s ignorance and lack of tact. Which often cause the loneliness and meltdowns in the first place. I wish people would engage their brains before they open their mouths.

I think the problem lies where others don’t understand what “tested” actually is.

Wouldn’t it be lovely if we could pop al9ng to the gp the very first time we decided to reach out for help and they hooked our DC up t9 a machine and “tested”

You could then take the label and do what ever helps.

The truth is a very long road of many frustrating years for very many of us.

Such a flippant comment “I wouldn’t get her tested”

I can't get past the fact your DS chose the menu that his friends would like.

What a lovely thing to do!

What an insensitive nosy twit she is. Not every parent has the choice but to have their child tested.

Your son sounds lovely - how thoughtful to choose food for his friends rather than himself when he doesn't like any of it. Very few kids would be so kind!

🍑She's an arse 🍑She's an arse🍑She's an arse🍑She's an arse

🍑She's an arse 🍑She's an arse🍑She's an arse🍑She's an arse

🍑She's an arse 👋jazz hands👋

Little song I sing in my head (to the tune of "I'm the map" from Dora or Diego -can't remember) when people with too much mouth and too little empathy decide to bless me with their opinions.

@Snortles

All the people you mentioned only see a tiny snippet of your DS' life and they are minimising what are to him really serious concerns.
GPs, family members, teachers and medics in general do not know much about autism unless they have personal experience of it and even then, if they've met one person with autism, they've met one person with autism.
The spectrum is NOT a sliding scale, this may increase understanding,
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

If any traits are having a significant impact on a child's daily life (and it sounds from what you described that your son's traits are hard for him to cope with,) then having an assessment is not the end of the world. Please remember that if someone has SN, they were born with those needs and will have them all their lives. If their needs can be recognised and interventions put into place to help them cope, you will have a much happier and more fulfilled child and adult that one whose needs are belittled and ignored because unqualified people that you have wrongly assumed would know "don't see" that there's any problem.

Kids and adults aren't given a label, they are given a medical diagnosis, often after meetings with several professionals from different disciplines which can open doors to help for their needs throughout school, FE and employment. It doesn't come on a plate alongside the diagnosis, but in many areas that support is far easier to access with a diagnosis than without.
A diagnosis can also help when kids are 'othered' by their peers and called weirdos, because they understand there's a reason why they are different (see Nooka's post)

How awfully ignorant of her sorry you had to go through that at your DSs party. FWIW I think getting a diagnosis is absolutely the right thing to do and is not about a ‘label’ but getting access to support they might need. When I was in school there was a boy in my brothers class (4 years younger) that was clearly on the Asd speectrum the school begged the parents to get him tested so that he could be properly supported but the father would have none of it he was VERY adamant that there was ‘nothing wrong with my child’ poor kid he struggled so much

Floella I love your song. The map song is from Dora haha. I will use it now too.

OP, You need to have 'fish ears' aka do not listen to people like that.

This is about her; not you. That’s all you need to take from this exchange. She’s struggling & trying to justify her stance.

I understand people not wanting their kids ‘labelled’ but as the specialist said, your child WILL be labelled whether you have your head in the sand or not. You are better off getting a medical diagnosis & label, than the other labels of naughty/disruptive/rude etc.

Having xyz isn’t a ‘bad’ thing, it’s just different to the majority of people and understanding the impact of that can only be a good thing.

Getting support & adjustments can only be a good thing.

Nimueh I think the issues are entirely her issues. She was calling her own child weird and expressing her own desire not to get her child 'tested'.

What I do think was a shame is that you kind of got railroaded into telling her perhaps more than you intended. It might have been easier for you if you could just said something like "Hes so excited he's not hungry."

By the way I love the sound of the food your son loves. Delicious.

Also, I do hope you are making some headway addressing the bullying. Knowing why people are different is all very well but no one should be bullied for any reason, ever. [ thanks]

My 2 DC were diagnosed as ASD a week ago. I have had completely ignorant, stupid comments from people during the testing and after diagnosis.
The two that spring to mind are:
DP's best friend who told me to stop making excuses for them being bullied and their weird behaviour and parent properly and it was not fair to waste the doctors time. We told him to fuck off and blocked his number and social media.
My friend, i do think she meant no harm asked me if i had autism because both my kids did.

your son sounds lovely and I am glad he had a good birthday.

@Obscured Thank you for the link, yes that was very very helpful. Naively I did believe it to be a mild to extreme spectrum. But thinking about it certain traits eg rigidness in routine and hating change have improved a lot over the years whereas others have worsened. Every child and every case is different.

Yes it's accurate to say they hardly know him, and he is most at ease with me, letting his guard down and sharing thoughts and concerns. I just hate the fact in this day and age professionals still won't take a concerned parent seriously.

Certain traits are proving incredibly difficult and putting a strain on family life, such as his obsession with time. We can't go out as a family and do fun things on weekends because he wants to sit at home so time will go slowly. Also his irritability with younger DS in general, but specifically when he is watching TV and poor DS2 is not allowed to move or talk. So DS2 and I tend to play in another room. Putting it down it's glaringly obvious to me he derserves an assessment and support

(Sorry OP for hijacking thread with my DS issues)

Loads of people assume the linear scale of autism, it's very misunderstood.

Good Luck on your journey to help your son Snortles The SN boards on here are excellent, try SNChat or SNChildren.

In my experience of one child, the traits don't actually 'get better' it's just that the child finds a way to cope with those particular ones, then other challenges can present, then in time they are coped with etc.

The thing about 'not labelling' when someone is obviously different is that the person with no label is likely to spend their life wondering why they can't do things like other people and blaming themself, feeling awful that they don't fit in. Not only does a diagnosis allow you to access advice, solidarity and assistance, but it also gives you an explanation for why you aren't doing things the same way as others. If this mother really thinks her daughter could be autistic but chooses not to have her tested, it's probably because she has a prejudice against autism and doesn't want to acknowledge that her daughter is affected.

It's always the dumb and ignorant ones who are so vocal.

'Empty vessels make the most noise'

At least you know to avoid this woman in the future.