Stupid things people have said to you about your child with ASD.

[pinkytheunicorn]

Humour me. I'm growing a thicker skin and getting better at taking things on the chin. My DD is only three and a half and was diagnosed in the summer. She is autistic. Doesn't do a lot of the stereotypical things, she's like a little adult to speak to and struggles hugely with groups of peers, unfamiliar people and places etc. Her learning is off the scale and she loves to quote facts and 'do you remember when' things to familiar people. She is a little weird, bless her heart but she's my little weird one and I adore her.

I'm trying to look on the bright side (of peoples idiocy and ignorance not her diagnosis generally- it is what it is and we are doing our best to help now we know what we're dealing with) But four short months after diagnosis I've already heard some corkers. Some amuse me in a weird way, some hurt. I know some people think I'm a shit parent, and that I've made my daughter the way she is - not in a good way - and that stings.

So, come on share some of the stupid things people have said to you, so I can feel less alone and also like it could be worse!

So far, mine have been:

• Is she like that because you're a stay at home mum and she's never been put in childcare? You should have gone back to work
• If you stopped pandering to her she'd be less clingy she's not clingy, idiot
• No wonder she can't mix, you never took her to soft play/toddler groups because she hated them and would shake with terror you fuckwit
• She's spoilt and mollycoddled ^

-^ She's not got ASD surely, she's so clever, she's just shy/anxious

• Oh just bring her to the cinema/soft play/my house full of kids she'll be fine it's you that makes her anxious

Anyone got any to add??

My little boy (7) was diagnosed in October last year.

When people challenge his diet it really frustrates me, he will only eat beige foods and very little of them. I've had, 'have you tried him with different foods with each meal' - eye roll!!

My absolute favourite was when I spoke to a doctor at our practice to ask for a fit note (sick note) as I was applying for employment support allowance for my ds, the doctor said “is he still autistic “

It was seriously frightening that he was doctor, needless to say if we have to see a doctor we don’t see him.

When I tell them DS is autistic: oh ok cool yeah (as in, they can clearly see)

When I tell them DD is also autistic: well, we are all on the spectrum somewhere aren’t we

No. No we all are not.

My son going through assessment at the moment. Comment was:

"I was like that when I was a kid. I grew out of it."

Even more irrirating is that this was said by his father (my XH) and um, no XH hadn't and hasn't grown out of the exact same traits!

At least my son will get support to navigate relationships unlike my XH.

"You really shouldn't get a diagnosis, people will think there is something wrong with him" HV
"It's a pity they can't see autism on the scans then you could have done something about it"
" Ooh what's his special talent?" numerous times. I answer "He can fly"
"It's because he's the youngest, it's because he's got siblings, it's because you had them close together, it's because you are older, it's because you are so laid back/too strict/ too organised/ you allow him to have it"
Absolutely loads over the years, everyone's got an opinion.

What I would like to know - is there anything that you would like to hear? That could make you and your children, the challenges you and they face, feel acknowledged and respected?

Just be kind and accepting that they're different but that they're still only children.

My DC are not a curse, your DC won't catch The Autism from them (you'd be surprised how many people act as if this was possible) and you won't be tainted by associating with them. Neither are they a triumph of evolution, they don't need to hear every five minutes that they are such an inspiration or that they are au-tastic or au-some (vom). They are not a charity case either, it's not a shame that they are autistic and they don't need to be pitied.

well, we are all on the spectrum somewhere aren’t we

I hate when people say this along with "we all have traits".

Dogs have hairy legs, wet/runny noses, and they can't talk. I have a stinking cold and laryngitis right now so I also can't talk, my nose is wet and runny, and I missed my wax appointment last week so I have hairy legs. Three traits in common with a dog. Doesn't make a bloody dog though, does it?

I know your children are not a curse, and to use my kids' vernacular, I'd fight anyone that said they were.

They are kids with a harder row to hoe than most. All I want is not to make that row any harder to hoe - for them and their parents.

Your not perfect, you're not saints, and you shouldn't be expected or feel expected to be. What you have to put up with in terms of wilful ignorance from people who should know better, and red tape making it that much damned harder - it's a wonder you don't go Guy Fawkes on some peoples arses.

What I would like to know - is there anything that you would like to hear? That could make you and your children, the challenges you and they face, feel acknowledged and respected?

Invite them to parties. Invite them for playdates. Come to their birthday party They may not manage it, but just do it. And don't complain to the school about them. They are not doing [whatever they are doing] on purpose. Your child is not committing to being their lifelong friend by going on one playdate.

Well at least he looks normal

Maybe when he gets older he can stack trolleys in the supermarket!

Well we’re all a little bit Autistic - followed by - She can’t possibly be autistic, she’s a girl.

@WeArnottamused say after me (sorry!) although it has no connection with ASD could I point out that women with schizophrenia present differently to men & in a majority of cases females present differently to males in ASD which is why until recently many women were not diagnosed.

I have 2 DS with dx’d ASD, DD isn’t @mumwon despite being textbook girl with Autism, GP wouldn’t refer without support from school, school kept telling me there was nothing wrong with her, & that we’re all a little bit autistic! Looked at me as if I was making it all up.......Until she fell apart in school & then they wanted to know why I’d not taken her to the Drs! 🙄 ffs!

Got her seen by a Paed who took her inability to talk to him & her anxiety as being a stroppy teen, & wrote her off.

She’s over 18 & classed as an adult now & is just about functioning in college with the support of anxiety meds

So as a mother of a child with an ASD diagnosis who feels this is a label and it is his personality and that everyone is on the spectrum somewhere - can you explain to me why these points of view are stupid? Is it because you think the people who say them think your child does not need additional support? Because my child definitely does.

I see it as a signpost, not a label, personally. The word label suggests it’s just a word you use to describe a set of characteristics, just another adjective. When in reality it signposts the individual to the right support.

"you realise he'll probably never leave home".

He moved out at 16 to a T&G school. He never even looked back. Literally.

But it can totally be a descriptor of one’s personality, too. I wouldn’t be me without it.

Actually the Sheldon comments don't really bother me about ds - because he's 15 now and very much is similar in many ways. My dad who adores ds and is fantastic with him (me and mum often note they are quite similar ) love ps TBBT and he mentioned it years ago before young Sheldon came out and before he was diagnosed.

He's actually quite proud to have a Sheldon of his own

What would I like to hear? Good question, truly. Sometimes just a 'that sounds tough' is nice when I'm having a moan rather than well meaning but completely irrelevant or nonsensical 'advice'. Acknowledgement that some things are more tricky for us than others and acceptance when we're not able to do things so might politely decline or make adjustments. Like someone else said often discussions end up being a defence of the diagnosis and that sucks.

I'm more than happy to answer any questions anyone has about DD and her condition. Genuine questions that is, not passive aggressive digs at my parenting disguised as questions. However, then don't use what I say to make a judgement on other autistic children or their parents. I can only speak for and about her. Don't make me the person that you're referring to when you say 'my friends child has autism and she isn't like that' etc.

I have one positive story that just made my heart sing. DD has formed a tentative kind of friendship with one little girl at preschool. A few months back her mum approached me and asked is she could invite my DD to her birthday party, she wanted to check first because she knows DD struggles. She explained that it would be held in a bright, sensory overload type place (think an Alice in Wonderland type room) and wanted to see if it would be ok.

I said thank you, but that I felt it would be a bit much for DD (she normally does not do well at parties in normal rooms). The mum asked, no pressure, if I'd like to take DD to the place (she has access) the week beforehand for an hour to familiarise her with it and see how she got on. What a bloody legend. I took DD, she was very tentative at first but after a while she loved it and wanted to go to the party. I took her, nervously, and the mum had also unbeknownst to me organised access to a quiet side room so I could take DD out for the noisy bits of the entertainment if it got too much for her. It did, but as I was able to take her away for a bit she was able to rejoin the party again and had a wonderful time. She still talks about it now (because she forgets nothing) and has kept her party bag which has pride of place on a shelf of special things in her room.

I don't expect people, especially people we barely know, to go above and beyond like that. But I appreciated it more that she'll ever know and that woman will have a friend for life in me.

It is so nice when people acknowledge that we might need a little extra help. My sister for example, the week before we were due to go to her for Xmas sent me a text saying 'I know it might be tough for DD over Xmas, is there anything we can do for her while she's here to make it easier for you all?'

My cousin too. When DD was diagnosed we went for dinner (just us two). One of the first things she said to me was 'is there anything that I need to be aware of that we should or shouldn't do now? We don't want to cause her any distress so if you think of anything let me know'.

What a smashing bunch.

@WeArnottamused My sympathy I had to fight tooth & claw for dd & I know how many hoops she have to go through - dd was identified as sn as soon as she entered school - multiple alternative diagnosis including epilepsy - & was on medication for many years with attendant side effects. I can only suggest asking advice from NAS to see whether they can help or getting private assessment - our route was getting private speech therapy (she had the epilepsy diagnosis at that time) because secondary school was concerned about her speech &it was this private speech therapist after 1 session who stated that she had asd - it is interesting that more females than males get diagnosed with OCD & less with asd & the presentations have overlap as does anxiety to some extent

@Everythinghasabias
To be diagnosed with ASD, a person has to have seen medical professionals and often had several assessments, for children it's often multi-disciplinary assessments and a diagnosis can take years to be given.
Parents often have their integrity honesty and parenting ability questioned, read through this thread for a small sample of what some parents have to do to obtain a medical diagnosis for their children, some of us have literally had to fight for years.

The term 'label' demeans the fact that child has not only a recognised medical condition but a recognised disability. Only people with a combination of traits 'which limit and impair everyday functioning' will be diagnosed with ASD.

Using the term 'label' for a diagnosed medical condition - why would anyone want to do that?

What do you do when asked to provide evidence of your child's ASD as proof that he needs support, do you hand over his medical diagnostic reports, or do you give them the label off your jamjar?

Was he diagnosed by medical professionals, or someone who makes sticky labels?

Why would you even want to demean, diminish, minimise your own child's medically assessed condition?

Labels can be removed at any time, a medical diagnosis of autism is given only when - to quote the NAS diagnostic criteria
www.autism.org.uk/about/diagnosis/children.aspx
'a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these "limit and impair everyday functioning".

Also, autism is a lifelong condition, not something you can grow out of, it's not a disease, there's nothing to "cure"

The above also answers the question of why we are emphatically NOT all on the autistic spectrum.

Anyone can have traits, but they will not be medically diagnosed as autistic unless they fulfil the diagnostic criteria.

Again, it's demeaning and frankly offensive to claim to be disabled when you're not - which 'we are all on the spectrum' does.
Good explanation of the spectrum here theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

@Everythinghasabias saying "we are all on the spectrum somewhere" trivialises and belittles the experiences of autistic people and the difficulties they have by implying that those difficulties are part of every day life, that they are common to most people. This then opens up the belief of "well I can cope with so why can't you?"

It is possible to share some of the traits common with autistic people but this does not make you autistic, it does not mean you are "on the spectrum" and it does mean you are impaired in the same way an autistic person is impaired. Autism is signified by the triad of impairments and marked neurodevelopmental differences, if you do not possess those differences you are not "a little bit autistic" or "somewhere on the spectrum".

Not liking eating noises does not make you autistic. Disliking talking on the phone does not make you autistic. Being "quirky" does not make you autistic. Not liking to be touched does not make you autistic. Enjoying "weird" hobbies or having "odd" interests does not make you autistic.

It is not acceptable to appropriate other conditions by claiming we're all a little bit diabetic or we all have a touch of cancer or everyone is somewhere on the asthmatic spectrum, so why is it acceptable to minimise autism by claiming it is simply a normal part of the human condition common to us all rather than the neurodevelopmental difference that it actually is?

Cross posted with @BlankTimes

Think we're on the same wavelength @Hoik

it does mean you are impaired in the same way an autistic person is impaired should read "does NOT mean"

From his Martial Arts Master well he doesn't do that here.....

no sir he saves it all up until hes a bursting mess and screams as soon as we get in the car ......

Or he cries and you just dont see it

Or he takes it out on his sister who dies the same MA

Or he screams and fries all the way home in the car and then trashed his room and is so anxious he doesn't want to go back !!

I do not want to demean, diminish, minimise your own child's medically assessed condition

However he is exactly the same person today as he was before his diagnosis hopefully he can now get access to help that he could not before, however as people have shown in this thread if I now say to someone he’s has autism they have their own ‘label’ in their mind of what that means.

I do not see him as disabled in anyway - life is hard for a lot of people because of a multitude of reasons, whether he has a happy and fulfilled life is not limited to this diagnosis.