Explain to me why you offence is caused by saying things like 'mildly autistic' etc.

[Purpleturtle45]

If ASD is a spectrum why do people commonly disagree that you can be mildly autistic or severely autistic etc.

My daughter is diagnosed with ASD, however you wouldn't really know unless you knew her well. She goes to mainstream school and copes well with everyday life most of the time so to me I would say she is mildly autistic but I often see people getting ripped to shreds on here for using that term.

Genuinely wondering how 'spectrum' can literally be in the title of the condition but people disagree there can be different severities.

I see a lot about that, maybe you aren't looking in the right places?

Not quite as i wasnt even on that page. Besides ASD, i also have OCD, GAD, dsypraxia, etc. DD has ASD, ADHD, OCD, almost all LD, etc.

I'm sticking with the official criteria of autism which I believe is the page everyone's on in the thread. And with that criteria, Autism is not LD; there are co-occuring conditions. I see some of my conditions as under the same umbrella (like GAD and OCD) and some as different but still inside the same person.

There is no one official term yet to define autism traits + OCD + ADHD, etc. As i said earlier, autism is a multidimensional condition anyway which really should be broken down or described to fit the various issues, before we add other conditions to it. So i can't go by what hasn't been defined in the DSM-5.

I'm starting to understand that what you and the poster are saying is about dismantling how autism is currently classified by NICE, which isn't on the same page as my earlier post. But i get what you're saying now. I quite agree that things should be evaluated further and in depth. It's just wasn't my point or aim for the thread. Hence why i was confused as to what the poster was referring to in my post. I think they quoted me but made a different point from what i was saying which kinda threw me off but I get their point now.

I think what most people consider profoundly autistic is having autism together with a severe learning disability and possibly even physical disability. Such a complex condition is of course more severe, and requires more support, then 'just' being autistic. I think though that there is little point in trying to think of autism in itself along the lines of mild to severe. A very highly intelligent autistic person, both in terms of IQ and emotional intelligence, will likely be very aware of their needs, learn to advocate for their needs and manage their needs well. As a result they might lead a very high functioning life and their autism looks 'very mild' or is even invisible to the casual onlooker. But the moment their circumstances change, and they are deprived of the autonomy to care for their needs and they can no longer do things the way they need to, they usually very quickly deteriorate to the point of becoming non-verbal and shutting down. My husband e.g. can go from global business leader to non-verbal autistic burnout, and my daughter equally can go from winning every academic and musical prize and having close friends to fulltime OCD and non-verbal burnout in an empty dark room. It's sometimes very simple accommodations, like e.g. my husband needs a day a week gardening, and my daughter needs to make her dinner a certain way.

Both my sons are autistic. They have very different profiles and presentations. My eldest is in mainstream school, very academic, can travel independently once travel trained on a set route, can make a basic meal, but still has support needs especially around personal hygiene, changes to routine, processing information. He wants to be an engineer.

My youngest is in specialist school, has severe learning difficulties and potentially learning disability. He is bowel incontinent, can’t be left unsupervised for more than 20mins, can’t travel alone, can’t do basic life skills. I’m not sure what kind of work he might be able to do. He will need supported living.

I used this template by Lanarkshire NHS to create their individual autism profiles, which has been helpful for them, me, and professionals who work with them.

My eldest has quite a spiky profile, with areas of strength and other areas he needs a lot of support and other somewhere in between. My youngest’s is more a contracted pattern with higher support needs almost across the board.

www.southlanarkshire.gov.uk/downloads/file/13763/my_autism_profile

I don't know - where the line is drawn between Autistic and non-Autistic isn't set in stone.

My son is autistic and he is very, very like me. I don't know if a full assessment would diagnose me, personally I suspect I'm in a bit of a murky borderline area and that it could go either way.

I have had someone tell me DS3’s autism is ‘mild’. That is offensive and ignorant because it is anything but. They based it on the fact DS3 would have been said to have high functioning autism (Note, he would not have been diagnosed with Asperger Syndrome because although his IQ is above 70 he had a language delay as a young child.) before the switch to encompassing all under ASD. Yet he is profoundly disabled with complex needs as per the wording on many reports/letters from numerous HCPs. His needs are so complex he has an EOTIS package with 2:1 at all times via his EHCP because it is inappropriate for provision to be made in a school. He also receives social care support and will never live independently. His autism is not mild in any way. Having an IQ above 70 doesn’t negate the complexity of his needs.

This is excellent. Here's mine, I am what people on here would want to call high functioning and mild. My profile shows you something different. When I was diagnosed they said they could tell within 30 seconds that I was autistic. I was told I was not at all borderline. But people on this thread would want to say I'm mild and that I don't need much support.

All "mild" means is that I don't bother you too much with my issues, but I struggle with them daily.

I disagree and so does the research. There are levels of ASD for a reason and most people with Level 3 ASD will have severe challenges in all of the above areas. I say this as someone with mild ASD myself and with a child with mild ASD. The whole idea that someone with level 1 ASD is dealing with similar severity of disability to someone with level 3 is incredibly offensive and inaccurate and perpetuated often by self diagnosed or influencers. Most of whom probably don't even have ASD in the first place or whom managed to have enough money to get some quack psychologist to provide a diagnosis which yea probably says Level 1.

An uneven developmental profile is a hallmark of all ASD and is different to the idea of levels of severity.

I thought that, but as you can see in my previous post, I was told it was instantly obvious and not at all borderline. I had just learned to mask a lot and internalise all my discomfort instead of melting down publicly (which ironically would get me support).

But that's a bit different to being non verbal, still wearing diapers and having extreme difficulty managing your emotions isn't it? Do you need chemical restraint? Do you need 24 hr supervision? Do you need a companion when you go out? Well then I'm sorry your Autism is milder than someone who does. It's as simple as that.

I'm situationally mute, self harm when I get overwhelmed, which is often, and often do need someone to support me. I'm not capable of working full time or even proper part time, I really struggle with relationships and I'm usually too literal and black and white for NT people to like me.
Your attitude is insulting because you don't see my struggles, and in many ways it's harder being like me than being like my nephew, who has comorbid learning disability and is non verbal and lives in a supported home. But he's extremely happy with no one expecting anything of him and providing everything he needs, whereas people expect me to "be normal" and judge me harshly when I'm not, because I can't be.
It isn't as simple as you are trying to make out.

Exactly it ISN'T any different. I am autistic, diagnosed as a teen and I am so sick of all these self diagnosed and late diagnosed women who in my opinion probably don't even have autism at all but rather a personality disorder, coming on here and saying that having what was once know as Asperger's is the same as having Level 2 or 3 ASD. It isn't. It's milder. By definition. You struggle yeah? So does everyone! Life is fucking hard for everyone. But it is much much harder for people with properly diagnosed level 2 and 3 autism. It just is.

Saying mild is not saying it's easy. It is literally just saying it isn't as bad as the other two levels.

It isn't harder. I have selective mutism as well. I used to self harm but I learnt how to regulate my emotions. I am extremely direct as you are finding out now. I used to be so socially inept that I couldn't even speak to a bus driver or cashier. I would NEVER think my life was worse than someone in a care home. You sound completely self absorbed and perhaps you should investigate whether your self harm actually comes from your ASD which is suspect you diagnosed yourself with or got a late diagnosis correct? If you have a history of unstable relationships, self harm, dissociation and poor work history perhaps you have borderline as well or rather than ASD.

all these self diagnosed and late diagnosed women who in my opinion probably don't even have autism at all but rather a personality disorder

I’m a late diagnosed woman. I most certainly do have ASD (and would not have been previously diagnosed with Asperger Syndrome because I had a language delay as a young child) and not a personality disorder. As diagnosed by the NHS. Along with ADHD and cPTSD.

I read an article recently by an American writer called Freddie deBoer about what he calls the gentrification of autism and disability in general. Reading some posters here declare that they are actually just as severely affected, or even more severely affected, than nonverbal profoundly autistic people who need round the clock care made me think of this part in particular:

"Because you must be able to effectively communicate to take part in the conversation, and because all of the usual privileges of class and circumstance influence whose voice sounds the loudest, the discussion becomes just another playground for college-educated urbanites. To speak you must be able to speak, literally, and you must also enjoy the privileges of communicative competence and educated-class signaling mechanisms. So we will always tend toward a conversation that defaults to the interests of the least afflicted. This is inevitable; it’s baked into the system.
We could overcome this problem if the people in the arena were dedicated to fronting (excuse me, “centering”) the interests of the most afflicted. But we can’t have that. We can’t have that because contemporary disability ideology is obsessively fixated on telling people to center themselves. That is perceived to be the entirety of the work: every individual with a disability must demand that the world sees them as “valid,” that they are just as authentically disabled as anyone else.....The whole social culture of disability activism and studies is leveraged to support the individual’s demand for attention and proper respect; it cannot countenance the notion that there are those who we should put before ourselves."
https://freddiedeboer.substack.com/p/the-gentrification-of-disability

Some individuals are unable to mask at all, ever.

I am not saying ALL late diagnosed. I am saying some or in my opinion actually many. What might 'many' mean? I would say perhaps 30%? Just a ballpark guess.

Your post didn’t say that, though. You did not say some or many. You have absolutely no evidence to suggest many have a personality disorder and not autism.

Because you either have it or you don’t. You’re autistic or not autistic. The severity of impairment doesn’t mean ‘more/less autism’ as you have 100% autism or 100% not autism. You can’t have just a little bit of autism.

That’s why people prefer things like ‘high support needs’.

Mild issues, need mild adjustments.
Severe issues, needs intensive adjustments.
Stop equating the needs of say, an adult that might be non verbal and incontinence with one that needs breaks at work and some adjustments within the work space.
Why are you comparing apples and bananas?
I wouldn't be surprised if they change the terms soon.
It's like saying that a double amputee is same as someone that has a limp and can walk independently but tires easily so needs breaks.
Or my friend who is legally blind but with the right glasses she can see just fine but without the glasses she can't see anything, is she the same as someone that will never see?

So how is she anything like my neighbour who is a non verbal adult who is also incontinent?
And will never seem like, oh that nice boy,
He's still has melt downs outside, bangs his head, hits children because he doesn't like them and watches coco melon on repeat,
How is your daughter anything like this man?
It's like saying someone has a sore thumb and one that has an amputated thumb is the same because they both have issues with their thumb.

When in high pressure/heightened situations, I now try to pre-empt by saying “Please bear with me, I have social communication difficulties” and I’ve found for the most part, it does actually alleviate some of the pressure and people are much more understanding and empathetic toward me if I’m struggling. That being said, I have to feel comfortable enough to be able to say that in the first place and I do sometimes lose my nerve. I’m not sure if this would be any use for your son, or even a printed card that he could show if not comfortable to say it. But I also know how difficult it is to appear different. My own son often refuses aids/help because he would find that more embarrassing. It’s sad, really.

It's offensive because mild is how you perceive it, not how we feel it.

We can have lower support needs, and that may remain so throughout our lives, or may fluctuate, there will also always be people with higher support needs all their lives.

My cousin is non-verbal autistic and lives independently. People would call him very autistic or more autistic than most, but that's offensive to him. He has more qualifications than most people, he's extremely intelligent, but grew up in a time where high tech AAC wasn't a thing so missed out on a lot of opportunities and was treated as lacking capacity for many things despite his main barrier being he did not have a voice. He wasn't taught to read or write until much later, simply because he wasn't offered those opportunities from the start. He does require help with daily living activities, but he has his own flat, and family just care for him by popping in and following his schedule. He can leave the house alone and go to shops alone, and he has friends he meets up with and hobbies, and finds public transport easy to use.

There are those of us who can speak, but can't live independently. I can attend meetings, and have worked, to the point of having severe mental breakdowns. I require significant support with my daily living activities, yet this wasn't always the case, and as a child I'm sure some people would have called my autism mild, however I was just really good at masking neurological distress or was punished harshly for showing I was in distress and my distress minimised. I was diagnosed later in life with a dual diagnosis of autism and cPTSD and that is from a lifetime of unmet need.

So your daughter may well present mildly to you, but there's no guarantee that will always remain the case, and it might not be how she herself perceives it, particularly due to spikey developmental profiles.

As part of my assessment on the NHS, I was screened for potential personality disorders as autism is a diagnosis of exclusion as well as needing to meet the dyad/triad of impairments.

You can't get diagnosed with autism unless you can evidence that your struggles habe been persistent, disabling and present since childhood.

I've never met a child with a personality disorder. They usually come much later in life. You can however develop personality disorders from trauma due to unmet need, which can occur in late diagnosed autism due to often decades of being misunderstood, misrepresented and dismissed, with even small but persistent daily barriers causing trauma.

Actually you can. An autism diagnosis requires you to have a certain number of criteria. For example, in one autism assessment the are 6 broad areas and to receive a diagnosis, you have to meet 4 of those criteria. There are some people who meet 1 or 2 or 3 criteria so they be deemed to have some autistic traits but not autistic.