Asking questions about autism

[joobleydoo]

I'm sad the thread tonight (from a worried mum looking for support around the possibility her son is autistic) was deleted.

I think some of the phrasing was clumsy but I don't think she meant to cause anyone any offence, and I'm sad we couldn't find a better way to work through it than the thread being deleted.

As a parent of two children diagnosed autistic, and awaiting autism assessment for myself, I want people to be free to ask questions about autism.

Unfortunately, there's a lot of mis-information regurgitated on MN and elsewhere about autism.

I didn't see the deleted thread, but do find it helpful to refer to the diagnostic criteria when people start talking about autism being categorised.

The Diagnostic Criteria on the NAS site gives a good explanation.

www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences

"The DSM-5 Manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”. "

note " present since early childhood, to the extent that these “limit and impair everyday functioning”. "
What's often misunderstood is that people have to have that level of impairment in order to be given a diagnosis.

It also mentions under the heading Specifiers that ‘severity’ levels may vary by context and also fluctuate over time, that the descriptive severity categories should not be used to determine eligibility for and provision of services, and that 'these can only be developed at an individual level and through discussion of personal priorities and targets'. "

@BlankTimes - that’s really useful, thanks! It’s very interesting to read this ‘ It also mentions under the heading Specifiers that ‘severity’ levels may vary by context and also fluctuate over time’ - this is particularly relevant to my dc. They have both coped pretty well during childhood (probably inadvertently helped by them being academically able and us being parents who set very clear boundaries - no self congratulation there, we fell apart parenting them as teens!). But into adolescence their autism became much more pronounced - social difficulties (and their awareness of it) and sensory issues have tied them in knots.
Academically, slow processing and the pace being quicker at secondary school meant they started to flounder despite being perfectly capable on paper and previously having no problems keeping up (in fact were used to excelling).

Some people found it hard to ‘believe’ they were autistic initially - but it didn’t take much digging by psychiatrists to uncover a mountain of traits they’d been masking at some personal cost to them. Now they can express things more easily and with more awareness of the cause it’s fascinating to hear about some of the things they struggle with or issues they thought were perfectly normal as children but now realise were not!

I realise for some children it will have been obvious from a young age that they were neurodiverse, others it’s later that it emerges. That’s the problem with autism, it’s such an enormously wide condition people struggle to comprehend that it all comes under one umbrella. Hence the ‘we’re all on the spectrum’ bollocks parroted so often (I’m sure used to think the same). Now I realise what it takes to ‘qualify’ to be on that spectrum at all you realise how damaging a misnomer it is.

I fall into the category of the born again Christian version of SEN parent For years I didn’t know I was the parent of SEN children, which sounds completely ridiculous when I write it. Now it’s my mission to share what I have learned (and I know I have only a teeny bit of knowledge) with other people and I hope other SEN parents do the same, not in a dinner-party-bore way but just challenging casual stereotypes when I come across them (a colleague mentioned the everyone on the spectrum thing - they have been politely re-educated!) and a friend of a friend was asking if there was a website with gifts for autistic kids - almost LOL’d at that one…

Anyway I hope what I’ve written helps someone. It is a frightening thought that your child might be neurodiverse but knowledge is power, by understanding more about their condition you can both help more effectively, advocate and also empower them. Diagnosis gives you access to support and funding that might otherwise be unavailable so if any parent is in doubt about whether to pursue diagnosis please don’t be. Labels and stigma are what people fear but your child will be neurodiverse whether they have that label or not so paving the way for them (and you) to access support and helping them understand themselves is the key to their future well-being.

@MyWordWhatAPalava - I don't want to get into a big conversation about it, but Level 1 doesn't say "mild" - you did. The whole point of the levels was to get away from "mild", "HFA" etc - I think it's generally accepted now that those labels describe how the public/professionals perceives the person, rather than how the autistic person experiences life. For example my teens would be considered very able/high functioning in some contexts, but they are massively struggling to do the same things that all the other teens do without thought or effort. They are consequently exhausted, anxious and restricted in what they can do. This is not seen.

Just saw this on Instagram.

MN had shared the original thread that OP here is referring to, but later saw fit to delete it.

@SleepWhenAmDead absolutely, apologies, I was pulling the word 'mild' from elsewhere in the thread. Yes, my dc are the same, anxious and exhausted but functioning within the world. Mine both have ADHD (as yours may too being as it comes hand in hand with ASD - no neurodiverse top trumps here) as well which adds a whole layer of its own problems, it's exhausting just thinking about what they are having to process even in the simplest interaction.

I think that until people realise that there is a large level of impairment even to make it onto the scale, we'll be facing the same issues of our dc being seen as just a little bit autistic*.

*so it's not that bad for them and now I don't have to feel uncomfortable about them being autistic (Joe Public)

@MyWordWhatAPalava I completely resonate with what you haven’t written. My DS was diagnosed ASD & ADHD at 14. Coped at primary but fell apart at High School and was very misunderstood. Everything made more sense the more he researched. Now I’m certain my DD9 is also on the spectrum but she masks at school and is also ‘coping’ right now but I fear what will happen once she reaches high school.

Should say more ‘I’ research. Not him!

I think it's generally accepted now that those labels describe how the public/professionals perceives the person, rather than how the autistic person experiences life.

I think this is spot on - it's about how others perceive an autistic's needs, strengths, differences.

As someone else said up thread, the measuring stick is how visibly different to a neurotypical person an autistic seems.

Having said all this, I still feel strongly that my friends who are parenting children with "more profoundly disabled autistic children" ( than mine ) really are facing challenges that I just don't know about, and I wish there was a way linguistically to recognise this quickly and clearly.

I also struggle with feeling that the world (and sometimes perhaps my friends of "more" autistic children) don't understand the pure misery of your child looking from the outside like they should be able to behave "normally" and people expecting them to just suck it up because they've got language.

Totally aware my post is relying on the very phrases we're trying to get beyond, in order just to try and convey my thoughts. No idea how to solve this problem and yet still be able to share experiences from the gut.

@joobleydoo - yep! I get what you mean. My friend's son has severe developmental delays and although he now looks more obviously as if he has additional needs, when he was younger and having complete meltdowns, people would be staring and tutting without having a clue what needs he had, very wearing for her.

I feel the same about my dc, they can dominate conversations when they get onto a topic which interests them, miss social cues, not ask the obvious question when they should (how are YOU feeling) etc and I want to explain to the person they are dealing with, it's not because they are being deliberately rude or thoughtless but obviously now they'd be mortified if I did. Luckily our closest friends and family know so that's the important thing but I worry about how the outside world perceives them. DD is enormously unobservant, ds is very detail oriented so they aren't even always offending from the same direction!!! Not that they spend a lot of time offending people but you know what I mean .

It’s sad that people can’t have different opinions or ways of talking about things without them being told they are wrong and things being deleted.
I’ll be honest I feel high functioning autism should be in a diagnosis.
I have a child who has ASD ADHD and is non verbal he is 5 years old. And I am also newly diagnosed with autism myself. I didn’t have the best of childhoods my differences became more clear when I went to high school and now with my diagnosis it makes sence to me.
Everyone with autism suffers im not taking that away from anyone.
Having a diagnosis of autism is telling you straightaway they suffer and are different to neurotypical children.
But compared to a child who cannot tell you what they want or need to the point they get so distressed they physically hurt themselves and others They are on the autism spectrum ‘high functioning’ in my eyes. As I said this is an opinion probably not a popular one. But when I look at the difficulties my child has compared to the difficulties I had I will happily say I am high functioning.

The following terms are the ones that usually derail discussions about autism and neurodiversity because people feel very strongly about them being used and misused. I've probably not remembered all of them, but think these are the ones that most often initiate inflammatory responses, even if they were used in good faith.

High functioning autism HFA on a clinical diagnosis only ever meant autism with an IQ of over 70 (so no learning disability) and no language delay. That's all HFA means.

The problem with using the term HFA outside a clinical setting is that people including other medics, teachers, wider family and employers if they were made aware assumed it meant 'academically capable and can pass for NT and needs no help or adjustments'.

It's just the same ignorance, that's ignorance as in unawareness, of autism that makes people assume if they don't notice any difficulties experienced by the autistic person that their autism must be mild.

Or that a non-verbal person with autism cannot understand anything at all.

Or using the trivialising term label instead of recognising autism as a valid medical diagnosis.

Or assuming the spectrum is a linear scale from high to low.

Or assuming everyone is on the spectrum somewhere.

Or assuming autism is a mental health issue.

Or assuming autism is a disease that is suffered from or needs to be treated or medicated.

The situation can become more inflamed between autistic people who can advocate for themselves competently and assuredly using social media and parents of autistic children or adults who cannot do so, trying to advocate and contribute their children or adults' point-of view.

Co-morbid conditions, both neurodiverse and physical and the severity of their effects on an autistic person are not well-known outside the autistic community and discussions concerning them under the umbrella term of autism often need a lot of explanation.

Then there's the question of where best to have a discussion about autism or neurodiversity. The SN boards, SNChat SNChildren, SNTeens and Young Adults, Mumsnetters with SN are very under-used in my opinion but the regular posters there are very knowledgeable and experienced. If a question's posted there, the replies will be from people who understand the situation.

The main boards, usually AIBU or chat or here (I only saw this thread as it was in Trending) attract many more replies, many of those are from autistic or neurodiverse adults and parents who never post on the SN boards, but they also often include a lot of NT contributors and the misunderstandings and contentious terms as outlined above can be prolific and the threads are derailed or deleted when things get too heated.

Very well said, @BlankTimes

@BlankTimes - excellent post

@cupcakequeen7 - I totally understand where you are coming from and I’ve no doubt that life is incredibly tough both being and parenting a non-verbal child with ASD and ADHD. I can’t even imagine and in honesty when my dc were younger we had a pretty easy time of it so it’s incomparable (parenting-wise).

What bothers me is the implication that if you are HF somehow life is easy. As I said in my earlier post, until it’s widely understood that you suffer from significant impairment just to be on the autism spectrum and while the ‘we’re all on the spectrum somewhere’ myths persist then people who are HF will suffer with the assumption that because they are ‘HF’ that’s akin to ‘almost normal’ so really life isn’t hard for them. Whereas in some cases it’s that ‘almost normal’ status that denies them any empathy, understanding or leeway from other people. Those people think they are, for example being obtuse or stubborn when they may in fact be confused and highly anxious.

I’ve mentioned this before (but I’m not going to let that stop me!) I have an autistic colleague - he’s extremely detail orientated and rarely makes mistakes. He likes to do things on computer system a certain way. If I try and suggest a different way he can become,what seems, quite belligerent and rude. He talks over me, interrupts and won’t agree. I know that is because my deviation from the ‘right’ way of doing things is making him incredibly stressed and anxious so I don’t take any offence. He’s a very nice man who would never intentionally be rude and would hate to upset me or my other colleagues. He just can’t cope with change (I have ADHD - am extremely scattered and forgetful, for me it’s enormously comforting having someone like him around who not only can help if something goes wrong but positively enjoys getting to the bottom of a problem) - I try to think of it as a symbiotic relationship, not sure he appreciates it as much as I do though

Anyway, I have diverted (ADHD anyone?!) from the point which is that ASD comparisons does no-one any favours and what will is re-education of the general population about what it means to be autistic at all. Same applies to OCD - you can’t be ‘a little bit OCD’ about something. It belies a breathtaking ignorance of the agony that condition can be for a sufferer. If autism is to be graded then it needs to be explained that the spectrum is completely separate from the 1-100 scale of people’s ‘NORMAL’ behaviour. So 1 is completely care free and easy going 100 is finds life tough going. The autism scale starts at 200 and goes up to 1000. The problem is immediately people would be ‘well they are only 200’ so not bad (completely ignoring it’s double the everyday difficulties of a NT person) but they would at least acknowledge that someone was 1000 - life was impossibly challenging!

I think it’s a tricky one but I fully understand your post and you have a unique insight into the comparisons so I really appreciate you sharing that and I am sorry for how challenging life must be for your son.

or not. Whichever you prefer (Dd isn’t very tactile, Ds loves to be held tightly - ruddy confusing ASD )

My oldest son is autistic with dyspraxia and is borderline for a diagnosis of learning difficulties. Following his diagnosis I pursued an assessment for myself, after 2 years wait in 2020 I was also diagnosed as autistic and my report specifically states I am high functioning. This terminology is still being used even though ‘Asperger’s’ has now been resigned to history. We do still need differentiation within autism because it is a spectrum condition, and we should not be afraid of using various words to describe and clarify an individual’s experience of the condition.

@MyWordWhatAPalava we have our struggles not so does everyone! He is a wonderful little boy’ your right it is incomparable but im sure there have been struggles for you that I will not be able to relate to or compare. The things being everyone is different - autistic or not. But with it being a spectrum disorder there does need to be language to differentiate. It annoys me for him that people get so frustrated when there child is called ‘high functioning’ I would bloody love him to be referred to as high functioning!! But again as I said im not diminishing anyone else’s struggles. Each person with ASD struggles that is clear from them getting the ASD diagnosis.

Really glad this thread has been allowed to stand and people have been able to contribute honestly and respect other people's opinions.
I am one of those much hated professionals who, like jooblydoo would love to have more language to be able to describe a child's needs without having to worry about someone else being offended. Overwhelmingly my experience is very few families worry about the terminology or language used, but their frustration is all around the appalling lack of funding to support their dc, and the fact they need to fight for everything and then wait on a waiting list for so long.
It is good to be able to have a thread like this where people can explain their thinking without being jumped upon by others and told they shouldn't think that way.

An example of the contentious issues in threads about neurodiversity, it's likely to be pulled.
www.mumsnet.com/Talk/am_i_being_unreasonable/a4439585-MN-and-their-approach-to-autism?msgid=113779512

Blank times - brilliant post.

cupcakequeen I get annoyed when people describe DS as high functioning because they are basically looking at the fact he is academically ok and making massive and incorrect judgements about how he is impacted due to his autism and will be for the rest of his life.

It’s not a race to the bottom or some sort of completion. You may say your not trying to deminish from other peoples struggles but your advocating for use of terminology which does just that.

Its really quite impossible to talk frankly about autism on here. People get in a right state. I'm a governor at a SEN school. I'm a SEN education advisor. I have two kids with ASD and possibly the other other two have it as well.

The thing is although it's a spectrum, lots of people will only except their own experiences of autism. The rest is shut down.

Like with problems in education ( I used to be on the SEN boards but left dispite good advice I thought I was continually shut down by two poster who did not believe in interventions like speech therapy or OT and appeals). Some people will not accept that different people have different experiences.

Similarly at school. I have one parent asking me for years how to get a ehcp when I repeatedly told her that if she keeps waiting and waiting and waiting as school have asked her she will be at secondary before anything gets done.

This isnt the place I dont think there are more open minded people locally if you look who will let you be honest and Frank. Not on here i dont think.

I remember someone asked me in real life why I appealed my sons ehcp. He is in a private SEN school and has been for four years while they still cant get speech therapy. They can not see that there more than one outcome.

It's a real shame as I was posting on the SEN boards about 9 years ago and the advice we got changed my sons life. The site was smaller then with less goady trolls

I’m not advocating for that at all @Sirzy I don’t know of how I’m saying it is coming across wrong as I have said I myself am autistic I know first hand the struggles. But I also have the view point from seeing my son and I do feel there needs to be a way of distinguishing between how asd affects people because there are some who are affected but will lead a fulfilling life they will have struggles but will go on have families of their own etc and then there are some who will rely on care for the rest of there life’s for simple every day tasks. So how is it fair for it all be diagnosed as the same without any sort of language to differentiate.

But how do you differentiate? It’s impossible to push people into smaller boxes because they still wouldn’t fit.

It’s such a spectrum. When Ds was first diagnosed a teacher said to me “when you have met one person with autism you have met one person with autism” which is spot on. To try to force it into boxes would just lead to even more stereotyping and more people falling through the net as They don’t fit into a box.

I agree @IncessantNameChanger that there are often a lot of people that struggle to believe other folk have different experiences and a different lived life where they might both have a child with the same diagnosis. Indeed, where 2 dc really are very similar, it can still be a very different experience due to everything else in that family - knowledge, attitude, family support (or not) , whatever else they are juggling in life, resilience, and indeed support available from their own local services, or lack of school places, etc etc etc.

Re the language used. I also dont think you can win.

One of my children has a IQ of 135 and one has a IQ of around 80. You cant say words like high or low so you then get people telling me that neither of the kids as ASD. Plus dispite their diagnosis of ASD I cant say that as its ASC now. I cant say disabled dispite the fact he has had a blue badge since five and HIS condition is very disabling. I cant say he cant read or write as some ones else child (like my other child) is extremely bright. It's not a curse and it's not a blessing. It's not a gift and it's not the end of the world. But it can be all of those things at certain times but you must not say that on here.

So how can you say "I can't get my child any help at school and I'm struggling mentally I need disability socail care help?"

Well you cant on here. You look for local groups. You meet real local people who cant attack you from a safe anonymous faceless forum. I'm am fucked off to my hind teeth with people IRL asking why I think my child has ASD, I'm not willing to get into a debate on how my child is / isnt disabled enough. Because they dont match up precisely to the next poster life experience.

You can then avoid the people who beg for help but ignore everything you say and you can also gravitate to those who get it while being in totally different "box" to you.

This isnt a fight worth fighting here and IMO recently its nothing like RL support.

When you get posters saying "help my child has issues in all three of the tirades" and then someone pipes up that it's a outdated view of autism. Why would you even want to engage?

Of all the fights of having a ND child, this one really isnt worth head space.

@IncessantNameChanger I think you have just hit it spot on.
You will never be able to win as you say with language used someone is always going to be offended. Even when offence isn’t not intended.
Also fully agree with the not the end of the world and not also not a gift and every day being so so different with times when things are awful and times when things are great. Regressions and progressions affecting this. I just wish we had a system that helped each child not more than another but on an individual basis not one getting more as deemed worse but getting the help THEY need.

@Sirzy

But how do you differentiate? It’s impossible to push people into smaller boxes because they still wouldn’t fit.

It’s such a spectrum. When Ds was first diagnosed a teacher said to me “when you have met one person with autism you have met one person with autism” which is spot on. To try to force it into boxes would just lead to even more stereotyping and more people falling through the net as They don’t fit into a box.

This. In spades. I've said it to mil a million times over, as she just doesn't understand how her friends grandchild can present so differently to my dd. Her friends GS, has all his language, functions well with big groups of people etc. Whereas dd is non verbal, becomes easily overwhelmed if too much going on, very sensory seeking. Whilst yes, they both have the same diagnosis, they are not the same in presentation. Even similar asd diagnosed people will still present differently.