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To be getting fed up and angry with the 'she's not autistic' brigade??

(83 Posts)
FutureChicken Tue 16-May-17 19:33:53

WE went a rough time a few years back when dd was 3 and she was diagnosed autistic. Non verbal and angry child, looked like everyone's steroyyype of autism.

Fast forward and she's done so well on behaviour and learning and we are delighted. However she still struggles and we work so hard to support her to be her best. Still some things are hard, but we're in a way better place.

Some people who've heard now go out their way to acost me to tell me she therefore can't be autistic. Reasons this week:

-she can now answer a simple question or two with one word answers
- she has a personality, she's not (mimic duh face here)
- autistic children are babies forever
-autistic children don't have personalities / think
- I just heard her talk
-she can count to five now (at five, with prompting)
-she's not aggressive (unless distressed she is pretty calm)
- she's just shy/ sensitive, anyone can see that

I spent ages coming to terms with it, did support groups etc to understand and get to where we are. The last thing I bloody need is people persistently telling me she isn't to try and go back to the crappy limbo stage and also end up being drawn into rehashing difficulties.

She can talk to adults yes, but she struggles with peers. Yes she talks, but like a child years younger which makes reception hard. She hurts herself. She doesn't sleep. Noise scares her. She has trouble with food/ toiletting. She runs in ththe road if not held onto at times. She gets focused on spinning and things in public and attracts attention... I could go on.

Aibu to ask people to stop and think before they do this? Fair enough if you're asked a question, but I can't understand why some people return to it over and over to discuss and disagree with a diagnosis that was a bloody long process to go through?

Tomorrowillbeachicken Tue 16-May-17 19:36:03

Tell them that there's a spectrum for autism. If they continue to argue tell them they are a uneducated muppet.

yongnian Tue 16-May-17 19:38:11

YANBU flowers

FutureChicken Tue 16-May-17 19:38:44

I do, but I'm really at the point of shouting 'fuck off' instead. Today's was a nurse who said she didn't checked with the doctor who told her about the permanent baby thing (probably did say that judging from my local place...) and went in and on about children with autism AND probably PMLD she's met

PurpleDaisies Tue 16-May-17 19:40:07

Oh that sounds infuriating. Can you limit contact with these people?

SauvignonBlanche Tue 16-May-17 19:40:13

Oh FFS!
My DS is living independently at university but he's still autistic.
Why are people so stupid?
Sorry you're having to hear this.

Tomorrowillbeachicken Tue 16-May-17 19:40:58

My brother was diagnosed in 90s and had similar discussions. As for the nurse I would probably complain. Silly bint needs more training.

Tomorrowillbeachicken Tue 16-May-17 19:41:28

As does the doctor.

ShiningArmour Tue 16-May-17 19:42:12

I hear you, 2 HFA dcs here, because they don't have a learning disability they can't possibly be autistic, and that's my family hmm

FutureChicken Tue 16-May-17 19:45:37

I have limited, or pretty much cut contact, I was sitting in the library and was approached by a school mum.

The mad thing is you then end up doubting yourself (whilst getting the sensory lamp and one hour bedtime routine going) and end up with meltdowns. Argh!

My dd is small, I think that's part of it. She could pass as three, is developmentally about that so is seen as too bright. Today I pointed out the mothers five year old, like most of reception class, was writing sentences. I asked why she bought dd knew no letters or numbers and just mouthed pencils....!

FutureChicken Tue 16-May-17 19:47:22

It's just like me telling her her asthmatic daughter isn't asthmatic because I saw her run at playtime so I'll be binning her inhaler for her really....

Oh I'm on a rant, but I needed to hear the opposite on here!

Tomorrowillbeachicken Tue 16-May-17 19:48:48

Tbh it's pretty depressing that nothing has changed in twenty years. More well known but same muppets around.

BackforGood Tue 16-May-17 19:49:16

If this was a nurse seeing you in a professional capacity (as opposed to a Nurse working n a completely different field who you happen to know socially) then you might want to suggest she does some training if she is so breath takingly lacking in knowledge. Even a basic entry 'Autism Awareness' course from someone like the Autism Education Trust. Or maybe suggest it to her line manager....

FutureChicken Tue 16-May-17 19:49:54

Just a social contact

Franticallypaddling Tue 16-May-17 19:49:57

I totally understand your frustration. My son is high functioning autistic - diagnosed at six. He starts his A levels tomorrow. It has been a long hard slog to get him to this point and we still worry about his future. All people see is a lovely polite young man (if I do say so myself :-)). Which of course means they question his diagnosis. This includes close family which hurts. We cope by counting our blessings that he is doing so very well in main stream sixth form (despite the fact that at one point permanent exclusion was on the cards ). He suffers from severe anxiety and stress even now. All the very best to you and your dd. Very few people will understand how hard it is for all of you, including your daughter, to achieve what you do. Hold your head up high. You are all amazing.

FutureChicken Tue 16-May-17 19:50:11

But a paediatric nurse!

MissHavishamsleftdaffodil Tue 16-May-17 19:54:10

I hear you. Fuck off is an answer as good as any.

Family members and others tried insisting my hearing impaired child could hear perfectly well and didn't need his hearing aids, since obviously multiple medical professionals and scans were just bollocks. confused DMiL was forever trying to sneak them out and call him or drop something so she could triumphantly tell us he could hear just fine.

soapboxqueen Tue 16-May-17 19:54:24

I think many people still have a stereotypical view of autism or think autism is one thing. They also think autism is static which it isn't. Autistic children still make progress and mature.

I'm always suprised by lack of understanding in the medical profession. Some do tend to look at you like your nuts when you say that they'll have to change their approach or that something won't work.

hockityponktas Tue 16-May-17 19:54:52

Yanbuwinebrewcakeflowers
I was told for years my dd couldn't possibly be autistic.
Still am now, despite years of difficulties and then a major breakdown for her leading to a diagnosis.
The only thing you can do to save your sanity is ignore them, which is hard I know (unmumsnetty hugs)

Imnotacelebgetmeouttahere Tue 16-May-17 19:54:55

Just wanted to send sympathy - we have 3 with ASD with varying levels of severity / need. Ironically our 4yr old daughter scored highest on ADOS, is selective mute, highly anxious and self injurious and yet people always seem baffled by the diagnosis.

"oh she doesn't look Autistic" - thats just the way I've dressed her today hmm

" but she looked at me" - oh gosh that's when she's plotting something terrible grin

" she seems so normal, are you sure?" - well I'll go double check with the numerous professionals involved in her care because you know what, perhaps you're right with your 0 experience and qualifications hmm

* I may be having a bad day *

CheeseCrackersAndWine Tue 16-May-17 19:55:06

I wish people wouldn't comment on something they are uneducated on. Our youngest who is 20 months and showing signs of autism although paed won't diagnose due to age, other things going on with her development etc but it was heavily mentioned at our last appointment and I get fed up of people brushing off her problems because visibility she looks fine and 'she will come on' well yes, she might and probably will af some point, but it's pretty obviously she will never be neuro typical. Sorry you are having to listen to ignorant people spout such guff flowers

Albadross Tue 16-May-17 19:55:27

I'm 37 and have a pretty good job leading others, I'm married and have a child. I can make eye contact and understand social cues. I'm also autistic. I've just been diagnosed after years struggling and not knowing why. I'm having the same issue with family and friends - it's soul-destroying!

OP - they don't see what it involves to get your DD functioning in the way she is, you've done such a great job that they're forgetting that.

zzzzz Tue 16-May-17 19:55:54

Just tell them they don't know what they're talking about.

It's ignorance, educate or ignore.

FutureChicken Tue 16-May-17 19:56:49

Misshavisham she is also HI and I get that too! Moderate/mild borderline, but she can hear Coe she answered a clear question in a quiet room and talks. You know, just prefers using mainly vowel sounds....

YouTheCat Tue 16-May-17 19:58:54

Some people are just utter twats.

Both of my adult children have autism. Dd is doing a degree in cyber security. Ds is non-verbal but could count and order numbers to 100 at 3, as well as knowing the alphabet.

I think your stock answer here is 'You don't know anything about autism, do you?'

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