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!

Some people don't understand. Someone I used to nanny for said, but you were all right with my son, when I told her I'd been diagnosed with PND.

Focus on your dd now and don't feel you need to educate those hard of empathy.

To pp, who trust a NHS diagnosis more:

www.telegraph.co.uk/news/health/news/5109442/NHS-trust-apologises-to-newsreader-after-changing-sons-autism-diagnosis.html

I doubt very much, this is the only case of a LA trying to put pressure on NHS professionals not to diagnose conditions to save money!

I assume @fizzypoo reads the Daily Mail. Thanks to their campaign to undermine Educational Psychologists the DofE (under Cummings and Gove of course) pressured OFQUAL to introduce new criteria for extra time in GCSEs for those with Specific Learning Difficulties. Now no longer do they take the diagnosis made by professionals together with a documented history of need based on the scientifically sound assessment of the spikiness of a pupils profile i.e . that their attainment, working memory, processing and speed of writing is well below that expected of someone of their ability and so they face a challenge to show their ability in timed conditions. Instead you have to score in the bottom 14% of the population for working memory, processing and speed of writing, in spite of the fact that for those pupils of lower ability this would actually be how you would expect them to score, it does not represent a disability whereas for pupils of higher ability this represents a considerable disability. Totally unscientific, in fact devoid of common sense.
But who needs experts when you have @fizzypoo

@BlankTimes Somerset have said they will not dx ASD in anyone over 5 years old. That is shocking! Isn’t that the age most kids get their diagnosis?

OP, if you’d like a bit of light relief, get the hilarious children’s book “Why Johnny doesn’t flap”, by Clay and Gail Morton.
It’s set in a world where the majority of people are autistic. Johnny is not- he’s what we would call neurotypical (or normal for our world).
The book is a wonderful parody. It earnestly explains that Johnny is different, that just because he wants to keep making eye contact and doesn’t have any stims (like flapping) or any proper obsessional interests, we should still be kind to him and try to include him in our rituals, etc! It’s a lovely tongue in cheek look at life from the Aspie/autie side.
My DD was diagnosed very late, as a young teen. Mainly because I and most of our family were also autistic and thought she was normal! We thought my other, neurotypical DD was the odd one out.
DD has an IQ of over 160, and is classically autistic, with virtually all the diagnostic features. But as she was born 30 years ago, it wasn’t on the radar. It was a revelation to read the textbooks and discover my family and me on every page!
I wish I’d known when I was a child - my life would have been so much easier. DD has a brilliant workplace, where they have a dedicated support network and provide all the adaptations she needs, including a private room where she can withdraw if having a meltdown.
Try to just ignore daft f and f comments. Or let them finish spouting, ask them when they qualified in neuropaediatrics, and say you prefer the opinion of your Professor and doctors, thanks all the same!
You are doing all the right things, OP. Just keep buggering on, as Churchill used to say, and you’ll get there. There is so much more support and understanding nowadays (even if it doesn’t seem like it from your relatives!), and your DD will find plenty of similar souls and her own place in the world.
My Bridge club is full of autistics, ditto DD’s work (maths related) - we all have a satisfying life.

Don't worry ....they'll catch up !!! You are allowed to punch anyone who days this !!!🤗

Yanbu. No one believed me with either dc. I was so sick of hearing things like 'all kids do that' whenever i spoke to anyone (family, friends, school).

One was diagnosed privately. The nhs wouldn't do an ados because they made good eye contact and had friends :/ and these are the supposed experts.

The other dc was diagnosed on the nhs a year or so after their sibling.

School never believed us with either. My eldest had left by the time they were diagnosed. When we mentioned it for our youngest they tried to say they were copying their sibling (they have polar opposite traits so their behaviour is nothing like their siblings) and mentioned the coventry grid . I'm pretty sure they only referred us because they thought we wouldn't get anywhere. 'Oh, really? ' was the teachers response when diagnosed. They think they know what autism looks like, they usually don't.

I was relieved with our nhs diagnosis because i know it won't be questioned. Sad but true. I notice no one ever reports all these renegade private professionals who diagnose anything if you pay them though....

Both my 9 year old daughter and I are autistic. I dont tell anyone about my daughter apart from school and i never tell anyone I'm autistic purely because nobody ever believes me and/ or it puts them off me.

There was even a thread on here from someone who was asking if its unreasonable for her to tell her autistic friend that she cant be autistic because she works with children!

I think it's harder to believe for females because we mask it so well.

Also society in general has a picture of how an autistic person presents themselves and unless you fit that you wont be believed.

Overtime it will change OP

Some people will eventually accept the diagnosis but then you will get "is s/he any better yet", "have they grown out of it yet" etc

Many children and young people don't get a diagnosis until secondary school age. Quite often they have coped until the pressure of school, puberty etc become too much.

No I don't read the daily mail. I actually worked in a school for DC who couldn't go to mainstream school. Within the school only two children had any diagnosis and the rest was trauma and upbringing that led them to behave in a way that meant mainstream schools excluded them. My friends DC eventually ended up in this school. Learnt behaviour is just as hard to manage as DC with a diagnosis, and the impact of poor parenting was easy to see.

I'm not saying this is the case here, I'm saying I don't quite trust private diagnoses and in my experience some DC are diagnosed privately that wouldn't be diagnosed through the NHS route.

We're quite lucky that immediate family got on board with dd's referral and subsequent diagnosis. We have however had similar comments from other people. Some I'm sure still think I have somehow exaggerated or caused her issues. Yes she's very clever, but that's as well as being autistic.
And then her Senco tells me they've never had a more autistic child in their school.
Like you I have a younger dc who is all about social stuff, friends everywhere and lurking around the middle of the class academically.

And we did get "When did she catch autism?" a few weeks ago...

I'm not saying this is the case here, I'm saying I don't quite trust private diagnoses and in my experience some DC are diagnosed privately that wouldn't be diagnosed through the NHS route.

You're right some kids can't get a diagnosis through the NHS, but you're wrong about why that is.
It's because some medical professionals are so ignorant about autism and refuse to even consider assessment because they believe all the autism myths.
Take for example the poster further up the thread who said that CAHMS decided her son was NT because i quote "he's verbal and makes eye contact."

Funny, i wasn't aware being non-verbal was a diagnostic requirement for autism.
Other examples from medical professionals (some of them paediatricians) include "he can't be autistic because he's too smart, too friendly, too affectionate, doesn't flap his hands, is verbal and articulate."
Tell me, how difficult do you think it is to get an autism assessment (let alone a diagnosis) when the people gatekeeping that are so spectacularly ignorant about autism?

I have 2 autistic children. People have insinuated that lightening doesn't strike the same place twice and therefore I'm to blame for it. DS2 does well at school and people therefore don't believe he has a disability as it doesn't fit their stereotypes. He was squeezed out of a club at the local library because he struggled with interacting with the others. They didn't actually say don't come again but made it clear that they thought his temperament was unsuitable and the other children found it hard to understand him. Because he doesn't look "disabled" people don't accept that he is. Autism is seen as either middle class parents excusing bad behaviour or working class parents trying to get benefits for their child. It sucks. It's relentless and having two with very different needs makes planning anything a nightmare. for you.

Was it a private diagnosis? I’ve noticed that people don’t take these as seriously, rightly or wrongly
I think it’s because children who are denied diagnosis on the NHS or don’t get past stage 1 often get a private diagnosis privately and therefore aren’t usually as typical or severe as their NHS diagnosed counterparts.

I do t know if people are being offensive or ignorant. I don’t have any knowledge or experience of autism, but when my granddaughter was diagnosed with a heart complaint while my daughter was pregnant, the first thing I thought was maybe it’s not as bad as they are saying drs have been wrong before etc.
It’s denial really.

@Fizzypoo Did you mean to sound so judgemental?

I'm sure you wouldn't think my DD deserves her diagnosis either. She has survived in mainstream school and is emerging with hopefully good GCSEs. And to look at her you would think: she has great language (has even won poetry competitions), great eye contact, has friends she's had since Primary school, and doesn't appear to stim.

Eye contact generally is pretty normal - except she used to "get too close" and peer into my face when little. Language was always advanced, but she didn't do the "experimenting with grammar" that toddlers are supposed to; she basically learnt new words by parroting their usage. And her stimming is very subtle, she just brings her two index fingers close together when stressed, and when not stressed too much, she doesn't do anything.

Dd also actually got a NHS diagnosis, at 9.
Yes some neglect can produce symptoms similar to Autism. But blaming parents who may be totally blameless doesn't help anyone either.

I've walked this mile more times than I care to remember. To his huge benefit, my DS was diagnosed at 3.5 (referred at 2.5). He is now 8 and described as "high functioning" and does indeed function very well...in public...because he's an epic masker. When he gets home, it's another matter entirely. Fortunately we have a very supportive school who have been wonderful with him and offer him so much. His father left mid-assessment and thus him and his hideous girlfriend also ignore it, largely because I think they are embarrassed that their actions left me as a single parent dealing with a SEN child. During assessment, according to them, I was "attention seeking" and "only seeking diagnosis to claim DLA". Post diagnosis, I was accused of "elevating" it. I've been told that there is surely "a pill" he can take to "cure it". I've been told I've done nothing except stick a label on him. I have had people say "they'd never have thought it". Those who are important to me and close to us know the score entirely therefore anybody else's ill-educated opinion is worthless as far as I am concerned. Don't get me started on the eye contact one...that took a long time to come, but is apparently now evidence of "cure". Righto.

OP, you're going to face a lot of ignorance and unwanted opinion. Stand your ground, concentrate on your little girl and give no thought to what people think. Manage her symptoms in whatever way suits you and benefits her. Thank goodness she has such a wonderful mum, she will benefit so much from such brilliant support. Good luck

Everyone I know who got a private diagnosis got one from an NHS service that also does private care. And they did it because of waiting lists. You can't just buy one off a shelf, you go through the same diagnostics with a team of people assessing your child.

It is a fucking nightmare getting a diagnosis. We were turned down the first time in case he grew out of it. He didn't, so the second time we got one. I do not think there are hordes of kids running around with an autism diagnosis who don't have autism. I do think there are many who haven't got one and should though.

You can't win with any diagnosis realky. Private = fake and paid for
NHS = dished out like smarties because everyones diagnosed these days and its overdiagnosed.

Only parents who have walked that road know how hard it is to get asd diagnosed

These are probably the same kind of people who think ADHD doesn't exist.

Of course she's intelligent. Having ASD means that she thinks about things in a logical, ordered way. However, it also means that she will avoid eye contact and can be easily distressed in 'strange' situations.

I would reply to comments like that with

"thanks for your input, however she's my child and I know what's best for her right now. It's been hard to understand this diagnosis and we would appreciate some support in doing what is best for her"

@purplerain16

"Having ASD means that she thinks about things in a logical, ordered way. However, it also means that she will avoid eye contact and can be easily distressed in 'strange' situations."

Where did you find that description of autism? None of those things are true for all autistic people. None of those things are in the diagnostic criteria.

It does not describe all people with autism by a long way, so please don't generalise like that, it's not helpful.

@blanktimes

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).

Actually, eye gaze has been used in the diagnosis of autism (it isn't currently diagnostic criteria because it's still being researched). 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.

@fizzypoo I am sorry but you are coming over as ignorant. The fact that you worked at a school for children in the main with behavioural issues does not give you any credibility in judging diagnoses of children with autism and other differences. As those of us who have supported children through diagnosis and support know full well even the people who purport to be experts are guilty of being ignorant of the diversity of issues but experience of children with behavioural issues definitely does not qualify you to pass judgement.

Autism is not a behavioural issue, you cannot cure it with boundaries and discipline. It is an issue of finding it difficult to cope with the neurotypical world, issues that can include social interaction, communication and sensory overload. Parents like OP and schools cannot address those issues with the tools of neurotypical parenting, they need to understand their children's needs and do all they can to make the environment easier to cope with. Just simple things like not having fluorescent lighting (which alone in terms of sensory pain can throw an autistic person into meltdown) which I understand even specialist schools for autistic pupils seem incapable of taking. Autism isn't made by environment, you are born and die with it, and it brings many strengths as well as challenges, so perhaps we should respect difference not judge it through neurotypical eyes....

No doubt you too would have dismissed me as stupid, lazy, dreamy and all the other labels that were put on me because I found the classroom a bewildering place, struggling to absorb all the information thrown at me at once and to keep up with others who could absorb literacy and numeracy skills with memory alone. And yet the 11+ system told them I was able enough for a very selective grammar school and so there followed yet more esteem sapping years when teachers could not comprehend why I could not translate my ideas and insight into exam success. The system is not good at dealing with difference, instead of judging everyone by your own experience and standards, try walking a mile in their shoes...........