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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To really not understand...

169 replies

jamoncrumpets · 28/11/2019 17:58

How some parents can't seem to work out that their kids are autistic before they start primary school?

I've read at least five threads this week about kids with no diagnosis struggling in mainstream school. Kids that aren't even yet on the ASD diagnosis pathway.

How could your kid get to five and you not notice that they were autistic? Honestly?

To be absolutely clear I am not talking about parents who have noticed differences and have started on the diagnosis pathway - I know myself from experience that it can take up to two years to get a diagnosis.

I'm talking about parents who have not even begun that process.

I'm genuinely baffled by it.

OP posts:
TooManyPaws · 28/11/2019 21:54

At the age of 58, my psychiatrist and the consultant psychiatrist were still debating whether I am autistic before diagnosing me with something I haven't a single symptom of... But, of course, my parents should have known when I was a toddler and even more so when I was a troublesome and troubled teen, but they were just grateful that I wasn't like my severely learning disabled elder brother. The OP would have known though! 😁

PlinkPlink · 28/11/2019 22:04

What a ridiculous post.
How arrogant
How judgemental
How snotty you sound.

'Oh I look things up on Google, arent I superior in knowledge'.

There are a ridiculous amount of signs of autism. Every single child is different. Every single child has a different combination of some or all of those signs. Not one single autistic child will be the same. Those tests show a whole manner of behaviours which could mean autism or behavioural disorders or personality disorders... the list goes on. That one list does not an autism diagnosis make.

On top of that, a large amount of parents would never want to think there was something 'wrong' with their child. Alot of them are in denial. Alot of them dont want their child labelled. Why? Because that's human nature, because every parent thinks their child is perfect as they are.

If you're such a strong advocate for identifying autism, get off your high horse on MN and do something. Join a local autism charity. Get a job that helps with autistic children and families. Stop thinking your superior googling skills are anything worthwhile when you use it to judge and belittle others.

ChanChanChan · 28/11/2019 22:04

@JamesBlonde1 may I ask how old your DD is?

Because up until a year/ish ago I would have been certain that my DD was not autistic. My DD is social, makes eye contact, has friends, joins in with activities, achieves great academic success, enjoys holidays (new places and experiences).

As well as all of the above, she also has a whole raft of autistic traits and has just been diagnosed as autistic. She is 17.

It is only when things "go wrong" and children start not coping with life that parents (and the teen in our case) begin to investigate causes of any atypical behaviour.

It's completely naïve (and downright rude OP) to think that autism can and should be recognised and diagnosed in the first 5 years of a child's life.

HippyChickMama · 28/11/2019 22:10

Ds was 7 before we realised he has autism, he had no speech delay, had some friends, makes eye contact, is very intelligent. It was only when the other children at school started to mature emotionally and in terms of fine motor skills that his differences became apparent. He still does well at school academically at 12 but emotionally and socially is a good 3-4 years behind his peers. I was diagnosed at 38. I hold down a good job, have an above average IQ and function well on a daily basis. Looking back the signs were there for both of us but not so obvious they'd be noticed by others if you weren't looking specifically. Don't be so ignorant @jamoncrumpets, Autism doesn't present the same in everyone.

HippyChickMama · 28/11/2019 22:16

And I agree with the pps that have said if you're autistic as a parent but don't know why would you see it? I asked dm if she'd thought I was different as a child after I was diagnosed and she said yes but she thought I was like df who we now realise is most likely autistic but also very intelligent. My parents felt extremely guilty after I was diagnosed, as did I when ds was diagnosed, so I don't think you're posts are particularly helpful

Abraid2 · 28/11/2019 22:16

My niece was diagnosed at 22. Girls don’t present like boys. She performed exceptionally well academically. As for that chart thing, none of those points seem applicable to her. Perhaps you don’t as much about autism as you think.

CouldBeOuting · 28/11/2019 22:20

I ‘knew ‘ DS was autistic from age 4. His school point blank refused to put him on the pathway. I tried to self refer but the assessment team always asked for schools opinion and school always said he was fine.

He was referred by his secondary school after ONE WEEK and at his assessment the doctor said it was obvious to him as soon as he met my DS. I can name FOUR other children in DSs year and the years either side of him who Were diagnosed in year 7. I have since worked with an ex teacher from the primary and was shocked by some of the things I found out.

MsAwesomeDragon · 28/11/2019 22:20

My dd1 is on the waiting list for an assessment. She's 20!!! She masks very well, was perfectly behaved at school, achieved well academically, etc. We had tried to get help for anxiety when she was 17 but we were referred to the wrong place and nothing was ever offered. She came up with her own coping strategies. They worked well at school, because school was predictable, she had friends, she was quirky but well liked. It fell apart at uni, because uni is not like school, it's unpredictable, there are far more people that you don't know, you live with strangers!!! She had to come home, we still thought it was anxiety and depression. She had counseling, but she couldn't access the counseling as she couldn't talk about her feelings. They were the people who asked if she'd ever been assessed for autism. So we pursued an assessment at that point.

I'm a teacher, I've taught several autistic kids. Every so often it occurred to me that dd1 had some similarities to one of the autistic kids I taught, but she was coping, thriving even, so it never seemed to be a problem. Until it was. She's also a lot like my brother, so I suspect he's somewhere on the spectrum too but won't go for a diagnosis. Our family was already geared up for my brother, with his fussiness and routines, so dd1 liking rules and routines, and being fussy about food, sounds and textures fits right in with our family.

Butchyrestingface · 28/11/2019 22:22

I’m genuinely baffled at how the OP managed to get to whatever age she/he is and still be such a fud.

¯\(ツ)

saraclara · 28/11/2019 22:23

I've spent my entire teaching career teaching children with autism and learning disabilities. And I never realised that my daughter had autism until she realised it for herself, aged 26, when as a teacher of autistic and learning disabled kids herself, she went on a two day course on autism in girls and realised they were talking about her.

I thought she was just a highly motivated perfectionist. She's expert at disguising the signs.

tabulahrasa · 28/11/2019 22:25

Oh and also the SALT my son had wasn’t for a delay, it was for articulation.

OutComeTheWolves · 28/11/2019 22:29

Off the top of my head;
-girls are notoriously late to be diagnosed due to the way Autism can present in females.

  • If a parent has undiagnosed Autism themselves they may not realise certain behaviours are not typical.
  • If it's someone's first child & they haven't been around many children, they may not know what to look out for.
  • the stereotype of a person with Autism (iie v logical, no imagination, really good at Maths) is a world away from how it presents in many children, so parents may not know what to look out for.
  • it's such a broad spectrum that it confuses many people. I know of a mum who was told by a doctor that her ds couldn't have Autism because he was good at writing stories.
  • maybe parents know but don't see how an official diagnosis could help.
FlamingoAndJohn · 28/11/2019 22:30

I do not remember a single kid in the 70s or 80s who had behaviour that would now be diagnosed with autism.

But as a child you wouldn’t notice. Also many children who were sent off to special schools or put in the remedial class so you might not have seen them.

There certainly were autistic people. Just as an example think about Steve Jobs. No idea if he was ever diagnosed but I’d be amazed if he wasn’t autistic. It’s just that many people weren’t diagnosed.

FlamingoAndJohn · 28/11/2019 22:32

Also, parents are often either in denial or simply don’t realise as they have no frame of reference.

I know one child who was clearly autistic but the family simply wouldn’t believe it.

ScoobyCan · 28/11/2019 22:39

Off you fuck OP with your ignorance. Some of us have children with serious complications and physical / mental illness, even getting them into school consistently for the first few years of primary is fucking hard work.

How the hell when firefighting with their physical or mental health, does one say one day "ah ha! I hadn't noticed before because I was dealing with other really important life or death stuff, but this little human being isn't behaving in the manner in which @jamoncrumpets thinks is noticeably autistic. I had better get them checked out."

😡🤬

user1471530109 · 28/11/2019 22:41

OMG this is post that has really pissed me off!

How dare you! I'm assuming you are a parent of an autistic child? You do realise there is a huge spectrum?

My child is 10. In the past 18 months it's become apparent autism is a possibility. Her dad and I are teachers and have taught literally 100s of kids with autism between us. We had no idea until recently. In fact xh is still in denial.
My dd is an expert in masking. It's only as she's got older it's all falling apart. She is the most delightful, weirdly empathetic child at times. Other times, her meltdowns have caused so much emotional pain.

Your OP is disgraceful. I have typed and deleted many more comments as I can't be doing with the HQ backlash. Maybe educate yourself?

coastergirl · 28/11/2019 22:42

I read a lot on here, but rarely post. I can't ignore this though.

For background: I started working with children with autism during my psychology degree as a work placement. I loved it and have been doing it ever since, in different settings. I've now been working with children (and adults at times) with autism for 14 years. I've also completed a Masters degree in Autism. I believe that nobody can be an expert in autism, because every person you meet is different, regardless of diagnosis.

I have a little boy who is four and started reception in September. I went to the GP with concerns about his development before he was two. He's been seeing a speech and language therapist since he was two. His nursery had concerns and referred him to the local SEN inclusion service. He's been seen by both ever since. He's made amazing progress but still has difficulties.

My point is this. Despite all my experience and education, and despite all the intervention he's had, I'm still not sure whether he has autism or not! Most cases are just not yet clear. Some days I'm sure he is on the spectrum, other says not so much. He's now on the ASD Pathway for full assessment, so we'll see what happens. But he's likely to be 5 by the time that happens. I work in a highly specialist school for children with autism. I receive a lot of excellent training. But it's just not that simple!

Maybe put away your judgey pants and try and understand that if I can't be sure, despite all my experience, then some parents don't have a chance of suspecting autism until professionals at school pick up on it.

PanicAndRun · 28/11/2019 22:42

DD scored 5 on that chart she's NT.

IWorkAtTheCheesecakeFactory · 28/11/2019 22:43

What a stupid question. 5 seconds thought would give you the answer.

Thestrangestthing · 28/11/2019 22:44

Off for a name change OP?

PanicAndRun · 28/11/2019 22:47

So, compared to your first year, and now, how many children on average present with these behaviours, however discrete, and have the number of children presenting with such behaviours increased over your 24 years?

What behaviours exactly? You keep mentioning them. No specific behaviour is present in all kids with autism, some might be more common,some might be viewed in just a few, but there's no specific autistic behaviour.

Allmyarseandpeggymartin · 28/11/2019 22:55

Op has fucked off, just as well really

saraclara · 28/11/2019 23:33

I do not remember a single kid in the 70s or 80s who had behaviour that would now be diagnosed with autism.

That's because they weren't in mainstream education, and many were in residential care. The more severely affected were just called 'brain damaged' and you didn't really see them out and about.

coastergirl · 28/11/2019 23:43

My dad and I frequently have these conversations about him being unaware of children with autism or other special needs when he was a kid (he was born in 1946). He's genuinely fascinated though and interested in my answers.

Before the 1970s, children with autism were considered to be ineducable. They were the responsibility of the healthcare system, rather than education. They were placed in institutions. Mothers who gave birth to babies with Downs Syndrome were often encouraged to place the child in care and forget they existed.

The combination of the changes in how we as a society care for people with autism, and the improvements in diagnosis, mean it's really not surprising that autism seems to be much more prevalent these days. It doesn't mean it's actually more common!

helacells · 29/11/2019 01:59

I often wonder why autism is everywhere now. I grew up in the 80s and never saw anyone displaying autism traits. Now it's on every parenting forum and you often see kids with obvious traits in public. Is there something in the soil or water that's damaging genes? Has anyone done a study on this?

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