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!

That’s very frustrating. I suppose you need to shut them down fairly firmly and move the conversation on. Perhaps “yes, it’s surprising but we respect and accept the professional opinion of Prof X”.

I’ve got a 9 year old who was diagnosed at 6. People don’t really get what it’s like at all. You just learn to grow a thicker skin and ignore it.

People just want to pretend everything is fiiiiine, just fine. My DS has a (mild) hearing impairment diagnosed by trained audiologists, I've been told by multiple family members he hears fine. DD and DS both have speech disorders that require intensive input, I've been told they're fiiiine, there's nothing wrong with their speech, they'll catch up by themselves. People love sweeping things under the carpet if they can't fix them or deal with them, and the bigger the issue the harder they'll try to sweep it away.

FWIW, my granddaughter was diagnose at about this age. She's now at a Russell Group university getting marks in the high 2:1/First bracket, and had spent the summer working in the US. Autism has nothing to do with limited intelligence. Mt GD was given the standard autism support and went to a supportive school. he major issue was, and still is to some extent, social mixing. She can become isolated as people think she's 'odd.' But she does make friends, and she's very happy. Best of luck, OP!

Remember SEN teachers are not qualified to diagnose autism!

That's 'my GD'

You sound like a very intuitive and empathetic person and sound like you have been key to getting this far with her diagnosis and no doubt your empathy and intuition has saved you daughter from countless difficult situations. Just keep doing what you are doing. Unfortunately these people do not sound empathetic or intuitive and I'm glad your daughter has you and not them. I'm sure if you stock up on some choice responses (mumsnet is amazing at this) you will be able to shut down the naysayers. Never forget what a huge difference you have made to your daughters life, how much easier you have made it for her. Take comfort in that. These people may never understand so best not waste your energy on them. Just keep doing what you are doing. X

They're being thick -- and possibly defensive that they didn't notice her not being NT before the diagnosis? And some people seem to struggle with disgnoses of autism in girls because of differences in presentation.

Incredibly aggravating for you, of course. If it's the slightest consolation, she sounds like a lucky girl with parents who are being very sensitive and responsive to her needs.

Oh that's another one, her age. 'How can they possibly know that at three?'. Well maybe because even at this age it's at a point where she really can't manage in certain situations?

I know I need to grow a thicker skin. I'm working on it. I don't know much about autism yet, but I'm fast learning and the one thing I have picked up already is that none of them are the same. It doesn't seem possible to make a sweeping assumption that because one child with autism behaves a certain way, so must another.

I've seen and heard this exact reaction about a diagnosed child.
It's so frustrating and downright rude.
I don't know why people insist on doing that,
Do they think they are being polite ?
That the diagnosis is an insult ?
Drives me mad .

People are arseholes.

Ignore them and don't let them stand in the way of what your DD needs to feel secure and happy. It might be a long battle though...

Thank you @Cloglover your response just put a lump in my throat.

@FilledSoda Nail on the head there I think. It's almost like I'm saying she has autism out loud that I'm insulting her.

I don't think there's anything 'wrong with her'. She's a bit different and needs a bit more help in certain situations, that's all.

What do you want them to say?

Sounds annoying. I guess people are trying to be helpful but failing. Even when I am with my in laws and one of my dd is ill (eg a fever, not their self) I always get told ‘oh maybe it’s nothing’ ‘she might just be tired’, ‘it’s teething’ or something. Even though you as a mother clearly know her best AND there has been a professional diagnosis people always want to express their own views. It’s annoying.

Unfortunately this is often why girls (in particular) are not diagnosed until they fall apart. People see autism as someone who is non verbal and 'flappy'.

Sad to say you'll have many people who don't believe you and may lose friendships. But those who do stay are likely to be a proper support. Definitely worth trying to find a local support group too.
You may find, after a while, some people do realise you're right. You just need to keep doing what you're doing and if they don't like it, tough. Your job is to look out for her, and you are. Well done you. X

My child with autism is a teen now but I’ve been where you are. Every bit of your post and every comment from other people...we had it all when DS was diagnosed at 5 yrs.

I have learned over the years to smile, nod and bite my tongue unless people are being very rude or disbelieving, in which case I pull them up on it politely but firmly with a brief response along the lines of ‘he has had a professional diagnosis and we are now trying to figure out how best to support him’. End conversation.

Are your closest family supportive? I was lucky in that my mother was extremely supportive and on board with us doing whatever was necessary to support our DS, which helped enormously when I needed someone to vent to about everything our family was going through.

MIL was not so supportive and some relatives thought our DS was just badly behaved, which was tough to deal with when we were doing everything in our power to understand and help our little boy.

Things that helped me were to join a parents support group/social club for parents of children with autism. This was a game changer for our family, as DH and I could talk/vent/share ideas and resources with other parents, and DS could ‘socialise’ with other families who just got it and understood when he had a meltdown or isn’t want to join in or was overloaded etc.

I’d also advise you to get cracking on getting an EHCP for your child. Once her needs are recognised formally in a legal document, you’ll have less explaining to do in general to professionals / teaching staff etc about the support she needs.

Best wishes.

@Horehound Nothing really! A bit of empathy might be nice though. I don't go shouting about it from the rooftops but if it's relevant I'll now say that she has autism. I recently turned down an invitation to a children's hall party which was going to be really busy, loud with a children's entertainer etc on a group WhatsApp and explained briefly why, only to be met with some of the responses I've put in my OP.

I could have written this OP so I totally understand how you feel. My DS is almost 5 and was diagnosed last week. My personal favourites have been ‘he’ll be fine once he starts school and sees how the older children behave’ and ‘do you not think they are too quick to diagnose anyone these days?’ I try to ignore most ‘but he seems so normal’ comments but sometimes I want to let rip and make them understand how difficult life can be for him (and us!) and how hard we work to help him do the things he does. And how long and involved the assessment process was, I first raised concerns over a year ago and he has had multiple appointments and observations. I hope things get easier for both of us OP!

YANBU. DS has high functioning autism, diagnosed after we asked for a referral ourselves.

Family and friends have been great thankfully but it's school who have been an issue!

Year 1 - he's just emotionally immature according to his teacher, nothing "wrong" with him, he'll grow out of it

Year 2 - dismissed my concerns with raised eyebrows - made it obvious she thought lax parenting was the issue

Year 3 - class teacher said she could see what I meant and supported our decision if we decided to go for diagnosis

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

Year 4 - sought diagnosis

Year 5 - got diagnosis from NHS but have spent rest of the year arguing with his teacher who seems to think DS's autism is a behavioural issue.

@Littlebluebird123 You're right. DD is not non verbal, she's quite the opposite her vocabulary is vast and she speaks like a little adult (although she was a late speaker, didn't talk at all until over 2y). She's not 'flappy' either. Doesn't do any of those characteristic autistic things, the rocking, stimming etc. She does tiptoe walk when she's getting upset. She looks upwards a lot.

I guess, in short and without being offensive to anyone - I'm truly not trying to be - , she doesn't 'look' autistic.

There is a saying.. if you’ve met someone with autism. You’ve met one person with autism! Everyone is different.

Can’t reinforce enough thatbyou know your child, you were right to get her assessed so she will get the right support for her own specific needs. Make sure you get into the EHCP route as soon as poss

People all like to think they’re psychologists. My DS has ADHD, most people (including s lot of the teachers), think that it’s either a) because I am too soft on him or b) because he doesn’t try hard enough. My family have only really accepted that it isn’t all my fault recently! So just keep on keeping on and be strong in yourself. People who don’t have an SEN child have literally no idea; and what makes it worse is they think they do.

@wigglybluelines post is exactly why you need to be seeking an EHCP for your DD, OP.

Otherwise you’ll be relying on individual teachers’ opinions. A change of SENCO, teacher, TA at school might mean a change in how her needs are viewed. The funding for any support will be an issue eventually.

An EHCP will outline her needs and quantify and specify the support she needs at school. The school then gave to provide it.
(sorry to derail thread a bit, but having been around the block with all of this, I couldn’t not point it out).

You can’t win really.

People who don’t know my twins who say things like “don’t let people label your children” or “there’s no way they can both be autistic”

Then people who say “it’s so obvious, I knew when they were babies”.

Both really hurt. One friend dumped e after the first was diagnosed. People suck, basically.

It's awful op it really is. On a side note where did you get your private diagnosis from? Camhs assessed my ds as being neurotypical as he is verbal and makes some eye contact, and I've wondered about going private