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!

YOu poor thing. We have had the same with DS, diagnosis age 7. I think people's view/understanding of ASD is a very stereotyped low IQ, flapping, poorly verbal person rather than the spectrum of clinical presentations.
No advice really except ignore them.

By the way I have two Masters degrees and a long and successful career in senior management. At one stage I used to facilitate boards in developing strategic plans. So many of them were autistic / hyperactive/ had specific learning difficulties. No doubt a nightmare in the classroom and other environments but if you need people who will focus on problems, see the bigger picture, have the energy and drive and focus to push things through............

@Purplerain16

LOL!! Me being unhelpful

Then it's a shame they didn't teach you that when you've met one person with autism you;'ve met one person with autism.

This thread is about the dismissing and generalisations that people with no direct experience of autism make about autism, you've illustrated it perfectly with the eye-contact myth.

" However, in a recently study on eye gaze in infants, all infants who avoided eye gaze were later diagnosed with ASD."
Again, this is not the case for all children and adults with ASD."

That doesn't even make sense.

Spouting "facts" like that which you've read somewhere is just adding to the general misinformation that's already out there about autism.

[Semi-derail. Just to say that I live in a county where until recently, children were assessed for ASD under the NHS by a single professional (bad practice IMO?) who didn't seem to diagnose anyone - the children I knew of that this person saw at primary school age came out with a letter saying they had 'autistic traits under stress' or similar but weren't autistic. The children that I knew of that had this experience were all diagnosed formally as having an ASD at secondary school age. After years of not accessing appropriate support, partly because there is so little out there anyway, but not even charities or support groups.

Things are slowly changing - the preschool diagnosis system has moved to a proper multidisciplinary clinic, at least - but ultimately any diagnosis system is as flawed as the individuals in it.] End of derail.

@BlankTimes

Please see attached photo of my revision from my exam on ASD and how people with ASD view faces.

I never once said it was a fact. I said it was something I had learned in my education at a top university.

I have met (and volunteered with) children with ASD and other conditions.

Believe what you wish, but I will believe what I have learned from years of scientific research, analysis and hands on experience with children and ASD.

I'm done with this now, and by extension you.
You're detracting away from OPs post with your petty comments.

#TeamBlankTimes

Autism is so hard to diagnose in girls because they don't always follow the general traits of autism that boys tend to have.
Girls can be socially led and hide it well. You should be extremely proud of yourself how well you've managed her so far and I hope you can get help with an autistic unit, courses etc to help put more things in place to ensure smooth transitions and no meltdowns.

My field of work is related to ASD. And I am slowly starting to suspect my nearly 7 year old daughter has it. she has a lot of traits and is extremely sociable and so very deceptive. School have finally highlighted issues and I am going into denial (mainly because I fear the future and bullying etc) but we are waiting for an assessment and will go from there.

Everyone I speak to tells me there is no way. But again, like you, it is because 1. She is high functioning and 2. I have put things in place to manage it.

Ignore them OP and keep doing you. She's very lucky to have you!

YOu poor thing. We have had the same with DS, diagnosis age 7. I think people's view/understanding of ASD is a very stereotyped low IQ, flapping, poorly verbal person rather than the spectrum of clinical presentations.

Not only that but people assume if you "look" stereotypically autistic, aka flapping/stimming, avoiding eye contact and are non-verbal or have poor speech that it means you must have a low IQ.
Now that may be true for some autistic people, they will have a learning disability - it's the assumption that ticks me off.

Thanks for your unhelpful comment. I learned this information throughout my psychology degree. Yes it's not 100% accurate and things aren't the same for every child with Autism (considering ASD covers a wide range of disorders/syndromes/conditions).

But your comment was inaccurate and unhelpful, it's wrong to assume that every autistic person is intelligent because they "can think in a logical way."
Did your psychology degree not teach you that "autistic people think more logically" is an autism stereotype? Same as not all autistic people will have any difficulty with eye contact.
You seem to be equally unaware that around half of people on the autistic spectrum have a learning disability.
It's funny, you acknowledge that "things aren't the same for every child" yet that doesn't stop you from spouting ill informed stereotypes about autism, talking as if every person is the same.
And ASD doesn't "cover a wide range of disorders/syndromes/conditions" either, ASD covers all people who are autistic - whatever the exact presentation of their autism. However that autism presents they all have the same condition - autism.

Please see attached photo of my revision from my exam on ASD and how people with ASD view faces.
I never once said it was a fact. I said it was something I had learned in my education at a top university.
I have met (and volunteered with) children with ASD and other conditions. Believe what you wish, but I will believe what I have learned from years of scientific research, analysis and hands on experience with children and ASD.

Well as an autistic person I'm saying your revision about how autistic people view faces is over generalized nonsense. And it makes me really mad when NTs talk about autistic people like we're all the same. No, not all autistic people are unable to read emotions from facial expressions. SOME autistic people are or struggle with that.
If that's the kind of thing you learnt about autism at your "top university" then I guess you know a lot of bullshit and stereotypes about autism and not a lot of facts.

#TeamBlankTimes

Agreed.

emilyontmoor Ds is at a selective state grammar. It's been awful. He was referred for an autism assessment at the end of year 9. He starts year 11 in September having finally been assessed a year after referral. But we are still waiting for his review appointment with the paediatrician to confirm his diagnosis.

He passed the 11+ with no formal tutoring but the overwhelming school environment has not worked for him. He's struggling to cope. Self esteem rock bottom. He won't reach his potential in his gcses next year. It's heartbreaking to see him struggling and so unhappy.

purple have you ever considered that the uni info may be outdated? There's such a stereotypical view of how autism presents in kids (and for girls its very very recent acknowledgement of ow different it can be) that its actually really detrimental.

We've had the opposite - a SEN teacher who was convinced DS was autistic based on similar criteria to what you've posted, and actually isn't based on a full dev pediatrician review. Many of the signs are co morbid / overlap with other behavior challenges

Having both a psychology degree and a child with autism I tend to agree with Blank that the post wasn't helpful.
A first degree is unlikely to educate you anything like as much as parenting an autistic child.

DD2 has ASD. She's 12 and was diagnosed 8 months ago after 2 years on the waiting list and 9 years since I first flagged my concerns.

She has eye contact - I taught her explicitly how to make eye contact when she was 4. However, the CAMHS worker was astute enough to see that she was giving oblique eye contact and had shifted position so that she could avoid looking at him.

She's very verbal, but the SALT could hear that her speech was stilted and formal, with unusual phrasing, which indicated that her speech was learned by rote rather than naturally developed. That's 5 years after a SALT decided that DD2 couldn't understand intonation, body language or interference, but 'it didn't impact her life, so she didn't need further assessment/therapy'.

She has Autism. Always has. It doesn't matter how much people argue it away, it's fact.

The best lesson you can learn is to care less about what other people say.

Your F + F are doing this for several reasons, as people have noted:

• because they think autism is always a Bad Thing and they want to "comfort" you (or themselves) by saying that your DD doesn't have it

• because they have a very limited or inaccurate understanding of autism and your DD doesn't fit their imaginary criteria

• because they don't want to bother dealing with something that might cause them trouble

• because they're just twats.

Unfortunately I can't tell you how to stop them pulling this shit. What I CAN tell you is that you are absolutely doing the right thing in parenting your DD with empathy, trying to make her as comfortable as possible, while gently encouraging her to broaden her horizons in a way that doesn't distress her.

Our DS was recently diagnosed with ASD at 13. The psychiatrist told us that we had actually done a great job of bringing him up with exactly that approach, and that it had made a huge difference to the way that he had developed. In her words, "You tried to make him happy, rather than trying to make him the same as everyone else." DS is genuinely happy and is comfortable with himself and his differences. You are doing a great job, OP, and you know your own child best.

I think we are so far behind with asd and a long way from fully understanding all its presentations. The whole girls present more x way thing is relatively new, but i personally i think it's already outdated. Plenty of boys present this way too and have also been missed. I don't think it's a female presentation, its one presentation.

@Fizzypoo - you can't know she created his behaviour. I have a friend who I judged when her DS was small. She always gave in to him. If he wanted a toy and my DS was playing with it, she'd wheedle it out of my DS and never tell her DS he needed to share. Lots of stuff like that. It turns out he is autistic and she was managing his behaviour very carefully so he didn't have huge meltdowns in public, to give both him and her a chance to socialise and not be isolated. I know her and him better now and look back on those early years and realise a lot more was going on than we ever saw.

My DSis judged me for being so rigid with bedtimes and meal times when DC were small. Her DC fitted in with where she went and what she did. I did the opposite and never did anything that upset their routine. But DS2 is autistic and I knew he just couldn't cope with flexibility. She saw me being 'uptight'. I knew I was just keeping him feeling secure and calm.

Just checking in to say to goodnight to the lovely OP and @.

I’ll come back tomorrow when I’ve not had 3 glasses of wine(!!) and answer your posts.

Stay strong though (I know that’s corny but sod it). You’re both brilliant mothers doing your best x

Meant to say @wigglybluelines

Thank-you @Oberonunder and @JanMeyer and @AlunWynsKnee as a parent of a now adult dd with ASD, several co-morbids and other conditions, I've encountered a lot of misinformation, generalisation, minimising and denial over the last 25 or so years. Sadly it's still ongoing. Even with so much information available at the click of a mouse, the old stereotypes still prevail in many peoples' viewpoints.

I think it's because it appears to be over-diagnosed (particularly self-diagnosed) so people are a bit skeptical. You see it a lot on here, people saying that because they're anti-social, or a bit odd, it therefore follows that they're autistic.

My DS was diagnosed (by a paediatrician) with Asperger's Syndrome. I thought long and hard before I told ANYONE and in fact very few people know. I am scared of what ill-informed nonsense they're going to come out with, so I'd rather just keep it to ourselves.

It did just occur to me, reading back through the posts, that the suggestion of a "That's not my..." style book could actually be very helpful in dispelling some of the myths about autism - or has it already been done?

E.g. "That's not my autistic child, s/he can make eye contact but s/he is still autistic too!"
"That's not my autistic child, s/he can socialise well with others, but s/he is still autistic too!"
"That's not my autistic child, s/he does extremely well at school, but s/he is still autistic too!"
sort of thing.

She sounds like me, at age 33 I've been encouraged by my post natal depression psychiatrist to seek a diagnosis. Well done for being the best advocate for your little girls needs, by going out to bat for her now you give her the best opportunity to learn coping mechanisms which are healthy as opposed to cobbling together a tool box which will fail when life gets tough.

I can sympathise. My son is registered vision impaired but it feels like every adult he has contact with is desperate to tell me that he can actually see well. From my parents to school teachers (even his TA!) or strangers we meet in the park - it feels like everyone wants to disprove the diagnosis. It really does wind me up - so often I have felt like they were saying it to challenge me and it was my duty to justify his diagnosis and prove I wasn’t a liar. Over time i’m realising that most of them do it to try to make me feel better rather than cast doubt and my response needs to be “yes he copes well, i’m very proud of him because he has to put in so much more effort than the other kids to do the same things”. Unfortunately in the world of SEN there is a tonne of ignorance and some of the worst culprits i’ve come across have been school and SENCos - sad but true.

Thanks for your unhelpful comment.I learned this information throughout my psychology degree. Yes it's not 100% accurate and things aren't the same for every child with Autism (considering ASD covers a wide range of disorders/syndromes/conditions).

I'd request to get the money you paid uni university fees back. if this is what you learned there, then you learned fuck all. It's not only not 100% accurate. it's 100% bollocks. HTH

notanothercrapusername.

You have a long road ahead of you. But you know what, you'll have a wonderful,quirky, intelligent DD,

My DGS was diagnosed at 5. Add dyspraxia to the mix and he is now a wonderful 13 year old.

Don't try to explain or justify your DD's autism. It is what it is and people will make comments all through her life.

Unfortunately, school and uninformed teachers will be your biggest hurdle. My DGS has been basically overlooked in the school system.

It wasn't until the psychologist and his OT therapist actually contacted his school and made them understand that DGS manages to be an average student purely and simply because of the great support team outside of the school system he has.
They were made to understand that due to his dyspraxia he actually feels physical pain when writing for too long a period.

Sorry if it feels as though I am derailing your thread but long term, you are the one who has to be in DD's corner and fight for the outcomes you want for her. Don't let anyone tell you, next term, next year or she's doing OK.

I understand where you're coming from. My ds is 13 and was diagnosed with Asperger's syndrome only about a year ago. (I've heard on here, they don't use that term anymore but that's what they told me he had, he's on the spectrum anyway). Looking back, I can see he showed traits from a toddler but he was my first, I didn't know any different, I thought it was just the way he was. He seemed to be really bright and talked in sentences very early but when he started school, he seemed to struggle with learning and handwriting. It became apparent when he started secondary school. His behaviour got very bad. He was raging at teachers and running out of lessons, I was getting daily calls about his behaviour and he was racking up a string of detentions and punishments, which he wouldn't complete so they would escalate the punishments. I was at my wits end with it all. Eventually we got him tested which took a while and he got his diagnosis. Since then, his behaviour has improved. Not perfect but a marked improvement. Teachers know how to deal with him better and so do I.
The trouble is, his dad who is my ex refuses to believe our ds has it. He thinks they just 'label' everyone these days and even thinks it's a ploy by the schools to fiddle the offsed behaviour ratings (meaning they push people to get diagnosed to 'excuse' bad behaviour)
He says he's just 'naughty' and 'different'. He says he knows people with autism and that means he can tell our ds doesn't have it. It winds up ds because when I've talked to him about things I've learned about the condition, he can relate to A lot of it. It upsets ds that his dad doesn't recognise it. He thinks he knows better than doctors, which is a lot of people's problem. They have a set idea, usually stereotypes tbh about autism and don't understand that not everyone with autism exhibits the same traits and often it can be 'invisible' unless you really get to know them. I've also had people seemingly 'pitying' me and asking me 'how I feel about it' as if it's a terminal illness or something. I know they're only trying to be concerned, but tbh his diagnosis was a relief to me.. it's not that I wanted him to have it, I don't think anyone wants that, but it helped explain things which in turn, got my ds more support. It sounds like your daughter has a very supportive and understanding mum and that can only be a good thing as she gets older. Sadly if people don't 'get it' you just have to ignore them and do what's best for your dd.