To be irritated by F&F reactions to autism diagnosis

[notanothercrapusername]

Hi there,

My almost 4 year old DD was diagnosed (clinically diagnosed) with autism a few weeks ago. I've long suspected she had it, just because of some funny quirks but her issues became apparent when she started preschool a year ago. I'm a sahm, and she's always really struggled in groups of children or being taken out of her routine right from being tiny and when joining preschool it became apparent that she couldn't cope with transitions, and literally struggles to function in a setting where there is a lot of noise and lots of kids. Thats simplifying it massively but for the purposes of keeping this brief! The recommendation to have her checked came from the preschool SENCo and her Keyworker who is extremely experienced.

Anyway, we've got the diagnosis and can begin moving forwards with strategies to help her. However I'm finding that lots of friends (who all have young children, all of whom are NT so not sure how they're experts all of a sudden) plus family members are being somewhat dismissive and almost disbelieving, constantly questioning what we've been told by the doctors. We had her assessed privately by a Professor who specialises in the area and a paediatric child psychologist at a well regarded clinic. She is also going through the NHS assessment route.

When I've told people, or explained that this is the reason we won't be doing something that makes her really distressed at the moment until we figure out how to make things easier for her etc people have been tending to say:

'Really? No that can't be right. She's so clever! Maybe she's just gifted instead?' (Her cognitive development is very advanced for her age, but her social development is very behind)

'But she can't have autism, she's been fine whenever I've seen her. She's just shy' (they've usually seen her at home or somewhere she's comfortable and generally she is 'fine' then and incidentally she's not shy at all when she's comfortable she'd chat the hind leg off a donkey)

'It's because you've been a sahm and she's not used to groups, she'll get over it' (she was the same when I took her to toddler groups when she was small, never left my side or interacted with any children)

'You've had postnatal anxiety and she's just copying you, she's anxious not autistic' (I did, when she was a baby, but am now recovered)

'I'm a SEN teacher and I wouldn't say she has autism'

'No one in our family has autism, where's she got it from? She's learned that behaviour from somewhere'

'She just needs to make a friend and she'll be fine'

And loads more. Basically the long and short of it is it would seem that people think that actually she's fine, just been mollycoddled by me being a sahm and needs to get over it.

Over the years, and pre diagnosis I have tended to decline invitations where I know that she'd struggle to enjoy things, or kick off entirely and need to be brought home because I've never seen the point in taking her to something 'fun' that she's only going to hate. Things that are fun for most children are not fun for her. It's pissed people off undoubtedly, I've lost friends, and I imagine people have thought I've said 'no thanks' because I don't want to bother rather than for her benefit. What they don't see is that not doing things has actually been isolating and very lonely for me.

I'm getting increasingly annoyed now that I know that actually I was right to put her needs first and not just force her to do things because I or someone else wanted to and we now know why and yet people are still being funny with me or making stupid comments. We are actually going to have to start pushing her out of her comfort zone a little more, but we need to do this in a controlled way with strategies to help. Not just say 'oh fuck it, she'll get over it'. She can't just 'learn to behave'. She can't. She doesn't actually 'misbehave' anyway, she just cries and wants to leave.

AIBU? Im getting to the end of my tether with this and it's only been a few weeks!

((Big Hug))

I’d like to repeat what @Cloglover said!

But also, as much as these F&F are really annoying, for your own sake try to understand that most of them mean well and in their own way are trying to help/support/empathise. Yes, they TRE getting it spectacularly wrong, but they don’t mean to. And hopefully they will become the people who help with babysitting/support etc once they understand. They really just want your & DD’s life not to be more difficult than life is anyway and are trying to ‘outrun’ the diagnosis. Little do they know that a diagnosis is a GOID thing and that (as you say) there’s nothing ‘wrong’ with DD, she just operates a bit differently than your average NT person. Understand her needs/ways is important and hopefully you can make the better ones understand that. Some of those comments are horrible, but I can imagine certain family members uttering them and how much work it would take to change their thinking. 🙄

DD is lucky, she has you, SHE will be ‘just fine’ because you’ll help her navigate this bonkers world, but I worry about you. Find a friend who is willing to learn what this really means for DD & you and wants to know how to help, forgive their clumsy mistakes and help them to help you

Above all, just keep on doing what you e been doing and everything will work out ok 🌷

Hmm yes these sound familar

Ds6 currently on the pathway. I say to those people who question the “label” that I’m not seeking a label but “reasons”. Reasons that I can then explain to people who don’t understand why he does things he does.

Some people suck and are super ignorant. There's a lot of stigma and misunderstanding around autism and many SEN conditions in general.

@Fruitchouli Thanks that's a really useful post. The ball is rolling on an ECHP. We're looking to find a local support group too, somewhere we can find some like minded parents to chat too and let off some steam.

Um, my mother is not unsupportive but she's struggling to accept it. When I told her we were getting DD assessed she said 'ooh you don't want a label like that put on her!' Nice, thanks Mum. She was also the 'she just needs to make a friend' commenter. I'm afraid she belongs to a generation where SEN children were shoved off to another room or school and left to get on with it and I guess she's worried that that's what'll happen to DD which of course it won't but she's too uninformed to know that I suppose.

My Dad has been fine, hadn't said much and my in laws are on board with just helping and supporting us.

Fruitchouli thankfully there's been a change of SENCO (twice !) since then.

I never met the last one despite asking to. She was by all accounts pretty useless.

The new one seems brilliant so far and I have a lot of faith in her.

We've also just had a meeting with a nurse as a follow up to the diagnosis (6 months later) which was really good, she signposted loads of support I had no idea existed.

It comes from a good place. People want to reassure you and no one wants anyone to have autism. But that doesnt make it any less annoying and frustrating.

Responses:
I dont remember asking for your opinion.
Well thats nice of you but a neurologist and 2 clinical pschiatrists say otherwise.
Thats not how autism works.
No its really not beacuse of xyz, its because of the structure of her brain.
Thats an interesting theory why dont you see if you can get funding and write a phd?
How would you feel if I said that about your physical illness?

Im not interested in your opinion.
When you say these things it makes me not want to spend time with you.
Why do you say that? How do you think it makes makes me feel.
Do fuck off.

Fruitchouli do you think we should go for an EHCP also? The school advised against it (before the new SENCO - haven't discussed it with the new one).

Sorry to hijack your thread OP!

@wigglybluelines That sounds awful. You poor thing!

We're really lucky in that DD has another year to go before she starts reception. We should have an ECHP in place by then. Her preschool have been amazing. Even with no diagnosis they planned and have funded for her to have a 1-1 next school year for the 15 hours a week she does there.

So hopefully, she should start on the right track to having the help and support she needs right from the off. The doctors actually said she might fare better in a classroom environment where there's less free play, mad running around etc and more sitting down and learning, but their concern would be life around the break/lunchtime/games side of things.

No help here... But I was diagnosed a short while back and I "came out" a few weeks later when I had digested it, everyone ignored my diagnosis. Family all listening to my SIL who works in a secondary school so obviously she knows better than the Doctors I spent 16 months with who are trained for it!

As time goes by you'll develop a rhino skin and stop caring. With some people you have to blunt and assertive for the sake of your child and not care if they're offended.

Your examples made me laugh as I have heard them word for word so many times over the years that I cannot count them. We had to go NC in the end because some people were just so awful about it. Oh well.

Just think 🦏 OP.

I have a DD and a DS with ASD.
They are polar opposites in some respects.
As the saying goes (for your friends who think they know) " when you've met one person with autism...you've met one person with autism"
Its is great that you've got her this diagnosis early, my kids were 8 and 11 when they were diagnosed and have missed out on support from services which could have really helped their self esteem and social skills. Take everything you're offered. See if there's an Earlybird course near you. Its a National Autism Society course and I found it helped with a lot of questions and the other parents there will be in the same boat as you.

YADNBU. Its infuriating. I am going through the NHS motions with teen DD. I'm feeling an incredible guilt I didn't start the process for help sooner but 5 years I've asked teachers and key workers all told me no she's fine as she's no trouble silent at back of class etc. I noticed so many quirks from really young but she was my 1st I didn't know any different. It's just my younger dc being so different and now her peer group growing up 'typically' when she isn't and she's really struggling with life so well done for being more proactive than me. Ive been told it's different for girls and as they grow they mask it well by copying others and present so different to boys. My friends haven't commented but my family think I'm talking nonsense. It's a bit soul destroying to have no back up. I really really hope that there is no diagnosis and it's in my mind she's just an incredibly difficult child but my gut says otherwise. I can't even write the things we go through with her .
I hope your early diagnosis smooths her path educationally and mentally OP just concentrate on your little girl others opinions should be ignored but I know how difficult that is in reality.

Another who thinks your family is trying to sweep it under the carpet. My husband's cousin's son is autistic but he has a PhD in astrophysics and he works from home as he can access the telescopes by computer.
So a diagnosis is the best way to help your daughter live her best life.

Can you find a well written but straightforward article online that you can forward to F and F? This might help them to understand.

the Senco said she didn't think he had autism as he could make good eye contact

Jesus wept. My experience of ASDs is limited to adults, but even I know that's bollocks. I'd have hoped that a SENCO might have a bit more knowledge than that.

Dd was eventually diagnosed at 10 years old after much fighting with the school who refused to believe she could be autistic.
It’s great that we’re your child goes is supportive as that makes all the difference.
We have also had all the above ‘statements’ from people when she was diagnosed.

Ddis now 15 and going to the high school has been the making of her. She made a nice group of friends and as my teacher colleague said ‘she’s found her tribe’
She doesn’t go out much to socialise but her friends at school are all on a chat forum and she contributes in the discussions etc.

@SmellbowSpaceBowl That's exactly it. I could've written that myself. Thanks for understanding.

My DD was the opposite. A great sleeper, always has done 12 hours a night from being probably 11 ish months. Needed two good naps a day until she was 2 and one a day until she was 3. Woe betide if she missed a nap. No one understood that either. 'Just put her in a buggy and come, she'll sleep there'. No, she won't, and where do you buy these magical buggies that make children go to sleep? Because DD never would. Cot or bed only.

Incidentally my second child will sleep anywhere, go anywhere, will happily be left, will play with others, loves a party and as long as me or DH is roughly in sight when we're somewhere unfamiliar, is as happy as a clam.

OP, learn to turn a deaf ear. I've had that non stop. Are you sure? DS2? Not DS1? But DS2 is so smiley. He hugs me. Etc. etc. People are ignorant.

We also had the ‘makes eye contact so not autistic’ and when she shut down in class and wouldn’t speak we were told she was being defiant . She was actually being bullied and closing off was her way to deal with it.

If I'm totally honest I sometimes think that children who have had private diagnoses have been missed diagnosed. I would 'believe' a NHS diagnosis more.

I have had a friend who's parenting created the challenging behaviour she felt with from her ds. She could not get him diagnosed with anything through the NHS. Private and he now 'has' ODD and ADHD. I think it's a load of bollocks. I wouldn't say that to her face, but we're not that friendly anymore due to her shit parenting and my DC getting hurt because of it.

I think there are too many people who understand too little about it but yet are prepared to spout their opinions to anyone who'll listen - they've "seen Rainman" or other films/tv shows about autistic people and so they "know" that your child "can't have autism because they're not that bad".

Bollocks.

I have a niece with Asperger's. Wasn't an easy pick - she's super bright but had high anxiety and stress levels, and got diagnosed at 7 (I know Asperger's isn't a "thing" now but that was her official diagnosis at the time).
I have a friend whose oldest DD was also diagnosed autistic, finally, at 9, having previously been given ADHD and ODD tendency diagnoses. She doesn't "look" autistic either, and in fact her issues were rather overshadowed by her younger sister's issues, who probably has PDA but that can't be diagnosed here because it's not in the DSM (gold standard here). She doesn't "fit" the autistic model well enough, so has NO diagnosis, despite regularly melting down at home (tho not at school). The psychs "can't find a diagnosis that fits her" - because they can't/won't diagnose PDA.

Friend's family have all come up with similar comments to those you have had - especially from the child's father (who is almost certainly undiagnosed on the spectrum himself) and paternal grandmother (well she couldn't spot it in her own son so why would she in his daughter?)

It's entirely understandable that you are upset by their reactions. It's not "shameful" to have such a diagnosis, it's a help to get your DD the assistance she'll need to navigate through life/school etc. In short, YANBU.

OP You sound lovely, instinctively understanding that the world needs to be changed to meet your DD's needs not your DD changed to meet the needs of the neurotypical world. Beware if you find F&F reactions difficult there are bigger shark ingested waters out there. Autism campaigners have huge difficulties with the powerful ABA industry which gains support from parents who want to change their children because they make their lives so difficult ( and I do not underestimate how difficult it can be ) and people who seek to profit from parental anxiety. There was actually an advert in our local Facebook page for people to train as ABA tutors - just off the street - and then the organisation charges £50 per hour to parents for these tutors to use methods to change behaviour that you frankly would not use on your dog.

I am not autistic but I am not neurotypical either so I fully understand that if your brain is different the you should embrace that difference, there is no "cure" though when my children have manifested their abilities as opposed to challenges I often get told they must be cured. The labels don';t work either as every as everybody's differences are different.

I would recommend you look out some of the blogs etc written by actually autistic campaigners as I think it will chime with your own response to your DD's needs. I will PM you one who has taught me such a lot about autism, sadly I will PM you as she has largely withdrawn from mumsnet as a result of finding herself exposed to some shocking ableism and antipathy from ABA supporters and I don't want to open her up to more risk.

I hear you. I think sometimes people are trying to be kind, to reassure, rather than tell you they're wrong. I've learned to mostly not raise the subject - it doesn't often help to be told I don't know my own child as well as they do.

I suppose I could also try seeing it as a compliment - nobody but immediate family are aware of the many difficulties and struggles we've gone through with my DS. From a distance, he seems like a very well adjusted and mostly content child. I'm bloody proud of that. :)

I have no more to add, but just wanted to say that you sound like a fantastic mum (I'm jealous of your daughter!).