To ask questions about autism.

[coodawoodashooda]

About 10 years ago i was in a meeting about autism. The leader said something like, 'if the child could......... then they didnt have autism. What was the quality that was being referred to? Was it empathy? I cant remember and for various personal reasons id really like to know.

@RickiTarr i have a Facebook group for autistic adults and yes a massive amount of us dislike functioning labels!!

With regards the empathy thing. The little boy I work with is 'very' autistic, and very capable of empathy. He notices and worries for those who are upset, he just doesn't quite know how to fix it. So he might draw a picture of one of his great loves to give them...which is totally logical because drawing that picture has made him happy and cheers him up when he's sad, so receiving it will do the same for the sad person.

High functioning autistics are far more likely to dislike “functioning labels” as they get no benefit from them and only the need to tediously explain on repeat that HF does not mean you “function like someone without autism”. The majority of autistics who benefit from the HF descriptor can’t mask to the point of “passing” and for them the descriptor is a lifeline. Autism IS a spectrum and those you hear describing their experience of living it are not the norm but a smaller subgroup of the whole. Mostly their understanding of less articulate autistics is very limited.
OPs child would obviously fall into the HFA group though so that experience is very valid here.

@coodawoodashooda

toastandtea

I don't think that you can therapy the autism out of someone. I do think that therapy can help validate how you experience society and yourself. It can help you recognise your strengths and weaknesses. I dont see why that experience is so far apart from a diagnosis.

This is such a bizarre train of thought. Therapy can only ever help someone if they know the root of the problem. If your child is autistic then all the therapy in the world will not change them.

I think good support can change outcomes and that sometimes that includes therapy. It depends if the therapy is focused and appropriate.

@coodawoodashooda

Vanishun

Nobody has explained why it isnt.
I don't think that I have the right to get a label for anyone, particularly if it changes the opportunities that life can offer. I think that is an adult decision for him to make about him. Not me.

It's a medical decision that you are responsible for making while he is a child. It's not about labels. The amount of parents who do t want their children diagnosed for fear of labels is staggering. With or without a diagnosis, if a child is autistic they are autistic. A diagnosis will help. Ignoring it will not.

As someone who was diagnosed in adulthood I can't tell you enough how different my life would have been if I had known and understood myself all these years. I would have been better prepared to protect myself, which shouldn't like something your child would benefit from if nothing else die to his abusive father.

If your child had a physical illness you wouldn't stop a diagnosis based on it being an adult decision. It's not an adult decision. It's a very important now decision.

I have a close friend who is autistic. Until I got to know them better I didn't know they were autistic, and as it was, they only got their diagnosis as an adult, during the first year of our friendship.

Friend makes eye contact, is very empathetic, very clever, doesn't stim. However certain environments are highly stressful, they work extremely hard to 'present' as "normal" by not immediately walking out of a room that is too loud/bright/hot etc.

My friend is very adverse to being called 'a person with autism'. Their explanation is that it is like saying 'a person with a hat' or 'a person with a suitcase' - the hat or suitcase can be removed/put down, but autism cannot.
As for the ' spectrum' my friend is clear that this is q harmful way of considering things. Essentially if you have met one autistic person, they don't form your template nor set your baseline for what an autistic person is it does.

Autism frequently has co-morbid conditions such as depression, anxiety, OCD, to name but a few, and these also drive behaviours that may, because of the autism, present differently.
Equally, a neurotypical person may demonstrate traits that have been associated with autism, but that does not make them 'a bit autistic'.

Off tangent somewhat but I have a friend who has mobility issues. For the same analogous reasons as my autistic friend they define themselves as 'disabled' and not 'a person with a disability'.

I think what OP is getting at is that within the range of NT human experience there's also a huge variety in what we struggle with or find easier, but we are expected to manage & understand that variation in ability without ever being given a diagnosis, a why.

There's a massive range, among NT people in terms of academic ability, emotional resilience, communication skills, physical skills etc. So I think what many NT people who don't have much exposure to autism struggle with is understanding what defines autism, when the current language on web forums is often "no ones autism is the same". Human beings are all different! To define autism there must be common factors among all autistic people so people are asking what those are.

Someone up thread mentioned the triad of impairments and the fact that to be diagnosed as autistic you must have significant impairment in all 3 areas. I personally found that helpful in trying to understand common characteristics of autism.

^Just to add to my post, my friend said that when they received their diagnosis, it was as though a light had been switched on.
They had spent over 40 years being told (and railing against) they were naughty, disobedient, disruptive, uncooperative, unintelligent, slow, difficult...
The reality is that they are none of those things.
They have used their diagnosis to research how their autism affects their everyday life so that they can try to work out some mitigation strategies.

@WeatherwaxOn

My friend is very adverse to being called 'a person with autism'. Their explanation is that it is like saying 'a person with a hat' or 'a person with a suitcase' - the hat or suitcase can be removed/put down, but autism cannot.
As for the ' spectrum' my friend is clear that this is q harmful way of considering things. Essentially if you have met one autistic person, they don't form your template nor set your baseline for what an autistic person is it does.

I could be your friend - I'm definitely not though because I don't have any but this is how I feel. 'With autism' minimises a persons autism. It indicates autism as a bit of a side order with the main meal. It's not something we just bring into play when it suits. It's literally who we are. We can't be 'without'.

The spectrum thing is so misunderstood. 'On the spectrum' makes it sound as if we have all been placed somewhere which in turn makes people think it's an indication of severity from person to person and that's frustrating at best.

@NoIDontWatchLoveIsland

I think what OP is getting at is that within the range of NT human experience there's also a huge variety in what we struggle with or find easier, but we are expected to manage & understand that variation in ability without ever being given a diagnosis, a why.

There's a massive range, among NT people in terms of academic ability, emotional resilience, communication skills, physical skills etc. So I think what many NT people who don't have much exposure to autism struggle with is understanding what defines autism, when the current language on web forums is often "no ones autism is the same". Human beings are all different! To define autism there must be common factors among all autistic people so people are asking what those are.

Someone up thread mentioned the triad of impairments and the fact that to be diagnosed as autistic you must have significant impairment in all 3 areas. I personally found that helpful in trying to understand common characteristics of autism.

This is so true. When I was being assessed I had pages of notes detailing all of my autistic traits. The majority were not used. The traits we think of are common autistic behaviours but they are usually not what is used for a diagnosis. It's about that triad and while there is an obvious crossover between the traits a person has and the diagnostic criteria it is surprising what isn't relevant. An example would be my tics. Very come for autistic people to have tics, relevant interns of writing an overall report when making a diagnosis but for the diagnostic criteria my tics were not relevant. The DISCO refers to movement but it's geared up for severe rocking and almost constant hand flapping, my tics were not enough to meet that criteria.

It's important to remember that autism is not diagnosed using traits/behaviour that is seen in everyone. That's why it is diagnosed. It sets us apart.

toast I will happily be your MN friend/advocate.

My friend has struggled massively with friendships in the past, but we have now been friends for over 10 years.

18 months ago they sustained a head injury with a brain bleed and this is affected their behaviour (increased paranoia, anger management), and 6 months or so ago we had a real problem and nearly properly fell out.
Time and space and open dialogue has resolved this but it made it clear to me then, which I hadn't properly grasped, was how different their perspective of an incident (that I was present at) was to mine.

@coodawoodashooda

Vanishun

Nobody has explained why it isnt.
I don't think that I have the right to get a label for anyone, particularly if it changes the opportunities that life can offer. I think that is an adult decision for him to make about him. Not me.

If your DS is autistic, getting a diagnosis will improve his opportunities, not limit them.

@WeatherwaxOn

The 'person with' thing is a tricky one as others will object to being called autistic. Once you know an individual, you can use their preferred language but when talking about a group it's hard!

I'm disabled and don't mind being called disabled or a person with a disability but I know people who dislike one or the other of those!

I have two children with Autism (both very different, I mean they would be anyway but honestly, like polar opposites.) and I work with children, some of whom have Autism or various challenges.

The "Why do you need a label?" question is very annoying for me. We don't get this angst over anything else. Nobody worries about diabetes or arthritis or migraines being a "label".

A diagnosis can be useful for understanding yourself, understanding your child, sometimes for accessing services and support...I don't go into the chemist and explain the exact nature of my headache and how it effects me I say its a migraine and we are both in the same book if not exactly on the same page. Its a starting point.

The diagnosis certainly doesn't describe all of a person or define them but it's a beginning to work form...as a parent when my children were very young I could look for strategies to help them and communicate with them on Autism specific websites, before that I was just trying stuff and struggling.

Also in my personal experience with my younger son, schools were so awful in supporting him we could have done with a literal label on his jumper so he wasn't told off for putting his hands over his ears when it got loud.

He now attends a highly specialised Autism Specific school its hard to see how that would ever have happened if he did not have a diagnosis of Autism.

I think in these discussions about "labels" and levels of functioning it's easily forgotten that some people who have Autism are profoundly impacted to the point of needing 24 hour care. Accessing services for them is utterly essential and the NT world would (I hope) be shocked with how much of a fight it is to secure help.

I wanted to say as well that some professionals and so called friends asked a lot why I wanted a label for my child and what it would achieve.

But society had already labelled him...odd...difficult....strange...disruptive...the naughty child...'that child'...weird.

You'll forgive me for securing a "label" that might explain or help him.

@coodawoodashooda

RickiTarr

Ptsd wouldn't be treatable until we can shake off the abuser. That comes in the form of his father andcwe have a good few years before we'll be able to do that.

It could be PTSD, it could be autism ,it could be both(they're not mutually exclusive). It could be neither and something else. The thing is you won't know until you start the ball rolling and get him assessed.

It's not labelling, it's finding the cause of his behaviour,identifying his needs and ideally getting him support and strategies to cope.

Therapy can be a useful tool, but it needs to be targeted and focused. Even if it was PTSD .

[quote MoMuntervary]@WeatherwaxOn

The 'person with' thing is a tricky one as others will object to being called autistic. Once you know an individual, you can use their preferred language but when talking about a group it's hard!

I'm disabled and don't mind being called disabled or a person with a disability but I know people who dislike one or the other of those![/quote]
I'm learning daily how to choose my words wisely as yes, different people wish to be referred to differently. I'll always aim to use a person's definition of choice.
Getting language to cover all bases is a bit of a minefield!

5zeds

Thank you for your post.

@WeatherwaxOn Essentially if you have met one autistic person, they don't form your template nor set your baseline for what an autistic person is it does. and yet you seem to be using your experience of one friend with an asd diagnosis to extrapolate into all autistics.

Personally I use person first language when in situations where I think the audience are failing to see the person, and “autistic” when trying to highlight we are autistic through and through. I don’t feel any affiliation to one form or the other and mostly call people by their names.

5zeds sorry if it came across that way. I have several autistic friends who use similarly defining language.

In terms of how I refer to people, I was unclear about context. In a social setting I obviously would not introduce anyone as, "X who is autistic" or "This is X, they have autism". I was relaying how those of my acquaintance wish to be referred to if the autistic element requires discussion.

Agree that it is very much necessary to see the person first and apologies if any offence was caused by that not being clearer.

If someone has autism, they have it, whether they choose to accept a diagnosis or not. It is far harder to access support once you turn adult, so it really is important to get the assessments while there is a system that allows access to them.

My daughter has just turned 15, we have years of her being anxious, stressed and worried about things.. finding hard to go to school… hard to be organised … difficulty regulating her emotions. I thought it was just “growing up”, until post lockdown when she had a number of highly distressing panic attackers, refused to go to school .. spent about a month where she wouldn’t get out of bed, her hygiene was questionable, and she was impossible to talk to.

We got a CAHMS referral, and whilst we were waiting a local organisation arranged some therapy for her. It was this therapist who said to me, when you meet with CAHMS, mention high functioning autism. The upshot being we are in the assessment process.

The mentioning of autism and neuro-diversity has brought my daughter a lot of peace, she’s had years of “what’s wrong with me”, and being depressed and anxious because if it. Now it’s like “ah, I get it”, and now we have a better langauge to talk about her problems. She’s now knows there us nothing “wrong” with her, she’s sees the world a bit differently, and she needs to learn how to interact with the world.

Since it got mentioned she is happier, calmer, we talk a lot more … a “label” has worked for us.

Getting back to the focus of the OP, which I think is really what OP can do to help her dc who is struggling to the point it has been highlighted at school by a teacher(how experienced they are and how old the child is would influence how seriously I took that).

As I see it either,

1. the child is fine and someone is over reacting to a blip in behaviour. Given both Mother and school have voiced concerns this is unlikely but these things can feed off each other and kids do go through bumpy patches

2. the child has PTSD OP thinks this is the case and in my experience Mums do know their children, however it can’t be overlooked that OP must have had a fairly traumatic time and contemplating disability on top may make her resistant to that outcome. I know one (out of many) parent who did not see the autism at all and for whom it was a surprise.

3. the child is high functioning autistic and has now reached an age where his coping skills are not enough to hide his stress.

4. the child has PTSD and HFA and while very able he cannot cope with both.

I would go through each of these scenarios and think about how a diagnosis/assessment would impact outcomes.

@BarrenFieldofFucks

With regards the empathy thing. The little boy I work with is 'very' autistic, and very capable of empathy. He notices and worries for those who are upset, he just doesn't quite know how to fix it. So he might draw a picture of one of his great loves to give them...which is totally logical because drawing that picture has made him happy and cheers him up when he's sad, so receiving it will do the same for the sad person.

That's lovely.