A diagnosis one

[CarGoat]

Ok, I know diagnosis etc.. has been discussed to death on Mumsnet, but ...

Recently I have come to realise that in every single family I know (as in, families I'm friends with or know enough to have been to each others homes, kids have play dates etc...) there is a child with either an established diagnosis of ADHD or Autism, or there is a child undergoing assessment/on wait list for assessment.

The final realisation, (and I guess what prompted this thread) came when the mum of my child's best friend told me he has recently been diagnosed with autism. I have never seen any traits and had no idea. He's a lovely, well behaved kid, has loads of friends, interests, plays computer games with my DC, they hangout together, play games together, chat together,.do sport together. I understand there must be some difficulties his mum has observed which led to diagnosis etc.. it's just, he seems fine!

I then reflected on all DC's other mates and realised just how many either have a diagnosis of autism/ADHD or have siblings with this. My nephew is in the process of assessment for autism. My other nephew is also being considered for ADHD and has assessment coming up.

This is mad.

These children, while they may well meet criteria and I am not doubting that, they just don't seem much different to the average kid in terms of communication and behaviour etc... so all are relatively 'mild' in terms of presentation (i.e. autism is not of a level that's non verbal, the children have good peer relationships etc). I know people will tell me you don't thave levels like 'mild', but I'm not sure how else to explain it - just that the children all 'appear' perfectly fine. They just seem like normal, average, healthy children.

So ...

Is this just a quirk of where I live, in that in my village there just happen to be loads of children with ADHD and Autism, but this is not reflective of wider society?

Or

Is this reflective of wider society? Are the levels of diagnosis of these conditions now this prevalent?

And if the latter - shouldn't we make the criteria for diagnosis harder and just acknowledge that we are all a bit neurodiverse to some extent, and make adjustments to the schooling environment to account for that, rather than having to fund all these individual assessments and locate the problem in all these children?

I just think it's ridiculous to diagnose so so many children and if nearly every family has a family member with a diagnosis then surely the diagnoses are a bit redundant and meaningless?

(I know some people will not like this post, sorry. I am putting on my hard hat)

We do say that a lot, especially at my work. I see many people and there is “traits of X and given the family history, it is likely” written often on people’s records.

This is why I give my kids and myself tutorials on 'how to do an autism' just so we can pull out the party trick when people make judgments on 'everyone has asd these days' and a sigh. The rest of the time we mask so it is not all that hard to be honest cos it is exhasting pretending to be NT when you are not.

Why can we say things partially sighted without recrimination. But Defining degrees of autism by how far one can lead an independent life is absolutely disgusting or have I got it wrong?

Great that your daughter got a diagnosis that has helped her succeed in life. Please note I have never said anywhere that all diagnoses made by private specialists are inaccurate.

Just another goady ND thread. I hope those that realise this are reporting, as mumsnet does delete them sometimes.

OP, how sad and miserable you must be to start a thread like this. I hope things improve for you so that you don't feel the need to do things like this in future.

Because it's not one symptom. By calling it mild, it's how you see it.

Partial sight is different. I'm registered partially sighted because I don't have enough vision to read a certain amount. But I can read more (just) than friends of mine who are blind.

This type of opinion annoys me to no end as it reeks of a lack of knowledge of neurodivergence.

Just because someone can seem to act ‘normal’ and like they’re doing well, doesn’t mean they aren’t massively struggling. It’s a spectrum for a reason, everyone is different, you can’t dictate what is severe or mild.
Yes, there are some more obvious traits like being non-verbal but just because someone can mask and blend in well doesn’t mean they are coping. It’s actually this that leads to meltdowns because people with autism are desperately trying to fit in and act normal and become so overwhelmed and drained because of it.

As someone who has autism and ADHD and would come across as ‘high functioning’ or ‘mildly affected’, it takes a huge amount of mental power and is incredibly draining to suppress my traits and stimming. To navigate social situations and force myself to make eye contact, to cope with daily demands with poor executive function, to act normal when noises around me are physically hurting my ears and all I want to do is cover my eyes because it’s too bright and I feel exposed and vulnerable because of it, wearing clothes which make my skin crawl and make me feel like I’m agitated and like there’s an itch in my skin and brain that I can’t get to.

My kids (especially my DD) may come across as mildly presenting, although they are both quite awkward and stim a lot etc, but I’m glad they will grow up knowing why they are the way they are and be able to get help, unlike myself.

when you start being condescending or aggressive towards another person that won’t achieve your desired result.
the OP has essentially been bullied into conforming to ideas and been bullied off the thread but there was no need for it.
it could have been used as an opportunity for her to understand more, and she might still not understand completely, but is too afraid to come back and ask questions because of people like you, which helps no one

Kinda like how we with asd and adhd have have had ti conform to societal norms for decades and we now try take every opportunity to talk about our lived experiences so we are not judged and afraid to speak out.

When a child with autism that affects them to the extent that they hourly self harm, they wake their mother up in the night by punching her in the face, high stressed, sweating anxious with very very little respite no language and no ability to have insight. I’m sorry if that picture is horrific but how can that child be equal on a waiting list for support to someone who actually has insight and has moments of joy during the day? I don’t think I’ll post anymore.

If there are thousands guys we have which we don't want to say to our friends because we care about them and don't want to upset or offend them, should we ever speak those thoughts to anyone anonymously?

Well, the first question you could ask yourself is "do I really need to discuss this?" since it doesn't affect your own child. Idle curiosity can easily lead people to ask offensive questions. Why would you expect disability not to be a sensitive topic on a parenting forum? As you said yourself Ok, I know diagnosis etc.. has been discussed to death on Mumsnet so you must have seen a good few threads. How did you manage to avoid knowing where this would go?

Or just shut up!?

You could ask your friends whether they would like you to do anything differently with their DC now.

That would t change my mind on anything or help me learn, or give posters the opportunity to challenge me (and likely others reading who may share my views).

I'm not seeking converts. You believed you had said nothing offensive, and now you know that you did. That's a start.

when you start being condescending or aggressive towards another person that won’t achieve your desired result.
the OP has essentially been bullied into conforming to ideas and been bullied off the thread but there was no need for it.
it could have been used as an opportunity for her to understand more, and she might still not understand completely, but is too afraid to come back and ask questions because of people like you, which helps no one

If I believed OP to be genuine, I'd think like that. I don't though. There are two particular phrases used that tell me this person has done this before and been deleted. Do you know mumsnet has a ND troll? Mumsnet have talked about it themselves. People like this aren't here to understand and certainly are not victims.

@TheSnugHare

Also, the OP has hardly been bullied off the thread. They have posted almost 40 times on it in a few hours, the latest one only 45 minutes ago. 🤔

Hi @FinishTheBook

Thanks for posting. I'm not sad and miserable, though you seem v angry with me so I expect you'd very much like me to be sad and miserable. Sorry to disappoint.

This thread wasn't intended to be goady or wind anyone up as I have previously explained. I'm not sure why you think I would do that or what it would achieve?

I am a genuine poster, but I get you disagree. There probably isn't anything I can say which will convince you otherwise.

I'm sorry if my views and opinions have offended you. I'm aware this topic touches a raw nerve with many and I am reminded by this thread just how sensitive this topic is and I'm sorry I should have phrased my OP and some subsequent posts better so as not to have offend people which really wasn't my intention.

I have learnt a lot from the thread. I think I'm a bit weird in that the way I learn is to put across my views and have them challenged. That's what's happened here and it's helping me think about things. There may be many people I continue to disagree with however.

It's v difficult posting on Mumsnet because there will always be people that read things into what you have written in ways that weren't intended.

Someone will no doubt read this current post and say 'see, from the way she writes X and y it proves she's a troll/goady/ignorant/etc..' I can't control how people take my posts, but like to think most people are robust enough that if they start reading the OP and don't like what they see, they can just leave the thread and ignore and it won't have caused any harm to them. For anyone offended by my words, I have already apologised.

If there are thousands guys we have which we don't want to say to our friends because we care about them and don't want to upset or offend them, should we ever speak those thoughts to anyone anonymously?

That was meant to say:

If there are 'thoughts' we have which we don't want to say to our friends because we care about them and don't want to upset or offend them, should we ever speak those thoughts to anyone anonymously?

Sorry for the typo

Both my children are ND. The average person wouldn't think they were. They both have their struggles....when you have met one ND person, it's exactly that...one person. Everyone is different. Also I read recently that when someone has 'mild' Autism or ADHD or Dyspraxia etc it means YOU experience it mildly, as in its not immediately or obviously apparent...it doesn't mean they have very real struggles and challenges.
There is alot more diagnoses as there are alot more assessments....awareness is greater than it has been in the past.

Flippin' heck, OP.

Just, please, STOP trying to describe levels of autism according to how YOU perceive a particular autistic individual on a particular day or in a particular environment.

Mild/severe is just another set of functioning labels, based entirely on how much the person's difficulties affect OTHERS. They don't describe what's going on inside the autistic individual, and how much damage/suffering they might be putting themselves through in order to appear in any way 'normal' i.e. neurotypical. Functioning labels are harmful, because they deny support to those perceived as high functioning and deny opportunities to those perceived as low functioning.

My DD is almost 14 and autistic. If you saw her at home in her room, chatting with her mother/father or playing Roblox with her friend while on a voice call, snacking on her favourite crisps, you'd likely struggle to see how she could possibly be autistic. Because she's in a 'safe' environment and therefore comfortable. You'd look at her and say, 'Oh her autism must be very mild, see how little she struggles, look how NORMAL she is'.

My DD also at home in her room, stimming frantically by obsessively preparing and then chewing on a roll of adhesive tape or desperately biting down on frozen baby teething toys, sitting in her towel for two hours straight because she can't cope with the transition into clothing, unable to wear anything other than the same leggings and socks she's worn literally every day for years, unable to brush her teeth even though she is utterly distressed by their appearance and fears dental issues, unable to eat because most food just feels 'wrong' and she's sick of her handful of safe foods, crying with hunger with ten different food items on the desk in front of her. Does her autism look quite so 'mild' now, OP?

Or my DD in school... completely unable to speak, frozen with fear, screaming inside but behaving perfectly because she's so utterly terrified of getting into trouble or in any way displeasing a teacher. Maybe then her autism just looks 'mild' to you, because she's not turning tables over and having a screaming meltdown?

Except my DD isn't in school, because she hasn't been able to attend for three years now and the local authority and the schools she's been on roll at have absolutely no idea how to help her. Because she kept on appearing 'fine', with her 'mild' autism, for so many years that it destroyed her and she literally could not set foot in the place due to extreme panic. Anything to do with school/education and she's back to extreme panic. Because, as you acknowledge, the school system needs a radical overhaul so it is actually accessible to all and doesn't cause trauma to those whose disability/neurodivergence make school in its current format so intolerable.

Being so affected by autism that she is completely non-verbal in front of anyone other than her parents and one (of three, although she barely sees any of them anymore) friend and hasn't been able to attend school for three years - does that sound 'mild' to you? Even if, in the right environment, she might look 'fine'?

You need to look up masking OP. Those that function more highly, especially women, do this. It has a huge impact on autistic people and they do this because people are very judgemental. Many kids will go home and then will have meltdowns/shutdowns and really struggle. You just won't see it.

I have a severely autistic son who is very delayed and nonverbal and is in a special school. I get your points about waiting lists etc, as we had to wait a year for a diagnosis and could have done with this being sooner, but I think those that function higher tend to really struggle in the teen years, so earlier diagnosis and getting support in place is much more preferable to a mental breakdown and self harming in the teen years.

I have happily gone through life really struggling with a lot of aspects, and i'm probably an underachiever despite doing well at uni. It's only recently I realised I probably have aspergers. I have always suspected and was perhaps lying to myself. I can be perfectly sociable in some situations and completely crap again and struggle in others. I had to go to see two different teachers to discuss my kids one day this week and found it really challenging and exhausting. I get overwhelmed when things are very spontaneous too and panic and have rituals, hair twirling stims etc. I just hide it from people.

I would have been happy to not pursue a diagnosis, but work we pressuring me to do something that had a real social element I struggled with, so I needed the extra support to try and overcome it/adjustments.I think more people are seeking diagnosis because the modern world/school expect people to be all rounders and highly social, when autistic people would struggle with this. I do think things need to be done differently now and these struggles acknowledged. It's opinions like yours OP, which means the SEND system is a crock of shit and so many kids are out of school. Stop minimising people's struggles and be happy you don't have any.

I often think this. Just how 'divergent' is it really if its 1 in 3 kids?

Or maybe, just maybe, we should accept that the spectrum of normal human personality types and behaviours is wider than we think?

Yeah but autism is still a disability because we can’t function the way that we’re supposed to

But isnt the issue more with the 'way we are supposed to behave'?
Eg if society were more accepting of some more unusual behaviours/traits, if it were more acceptable for people to follow a different path, it wouldn't be so disabling.
Eg i think one issue now is the obsession with promoting university to all young people, and the snobbishness around some different paths, creative subjects have been hugely devalued in schools when in the past these areas could lead to valued jobs in society.

Im sure in years gone it was easier for young people to maybe become a self employed craftsman where they could work in solitude if that was what suited them, in working conditions of their choosing, doing something they enjoyed and could make a reasonable living from.

Because the child or adult who has moments of joy and insight isn’t always the same behind closed doors. There’s only so far a string can be stretched before it snaps.

I think that’s the case for some aspects of autism but other aspects of my autism will always be disabling like my inability to form friendships (not because we don’t want any but because of constant misunderstandings/miscommunications, I find socialising exhausting, not because I’m masking (because I don’t bother) but because my communication style is different, I have a processing disorder and listening to what the other person is saying is so taxing. I make friends in a way that isn’t normal so I don’t have any. I wouldn’t say I have any special interests, I do have interests, but I feel like no one understands me and thinks I am weird. I was sitting in my neighbours house and started disassociating and they asked me if I was ok. I was fine just sitting enjoying their company but I couldn’t say the right things and it just causes loads of problems. Not everyone’s autism is the same as mine. I’m not exhausted because I’m trying to maintain Eye contact or something because I don’t bother. I will make references to shows I enjoy and watch over and over and I will try to show pictures to other people. I know I’m not like anyone else and it will be almost impossible for me to form relationships. I communicate things in ways that are interpreted differently to someone else. I misunderstand others all the time. I’m fine just sitting under a tree not thinking about anything but I will be approached and someone will ask me if I am ok or comment I seem to be thinking deeply but I am just existing. I just feel so ostracised and lonely

It might have felt a little bit more genuine had you said to those posters 'I'm sorry that I caused you upset by making these comments' rather than the generic laying the blame upon the person upset for being silly (or autistic?) enough for find somebody denigrating their condition/their child's condition and advocating for a removal of diagnosis.

But you didn't. Because you're not.

I don't really know what you mean @NeverDropYourMooncup because I'm not what? Sorry? Genuine?

To anyone who has been upset by my posts - I'm sorry that I caused you upset.

Really. As I have said. My intent has never been to upset anyone.

I never said anyone was silly or anything to have been offended by my words.

I think really that for whatever reason, probably because you have been offended by my posts, you just don't like me and think I'm a troll and no matter what I say, I will not shift that view. Which is a shame but I don't think I'll be able to change you mind.