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.

Exactly this

What has anyone actually said about your children? All I've seen on this thread is you passing judgement on others.

I've had breast cancer & have severe diff related to a form of autism.

The first was a piece of piss to be honest. Diagnosis, funding & treatment all handed to me on a plate. NHS charities etc all falling over themselves to hand me help, gifts etc. Even got the train fare paid for to get to the radiotherapy.

MIL died rapidly of pancreatic cancer, it was quick & very little hope from the start.

Autism spectrum conditions are even more diverse and poorly understood than cancer .

Funny how disability & chronic illness bashing is okay until someone mentions cancer - oh no, cancer is special & sacred you all cry. Truth is that it isn't at all.

My child doesn’t have learning disabilities he has autism. He will never have a relationship or live independently. This thread (started with the best of intentions OP) has just confirmed all my worst thoughts.

It’s the late diagnosed, MILDLY autistic people who shout the loudest, to compare life outcomes is, quite frankly, insulting. Almost as bad as the ‘my autism is my super power’ people.

I’m sorry if my description of autism offends you as yours certainly offends me.

Really? So if the autistic child has parents that are excellent at dealing with an autistic child and just make it work, embrace the differences, have all the correct provisions and go on to enjoy life by your definition the child ceases to be autistic?

The threshold is NOT ‘severe impact on life’.

Where did I say that?

If someone needs provisions and people who are "excellent at dealing with them" to cope with life, they are, by definition, "severely impacted", no?

The phrasing I've heard is 'significant' impact, which seems more useful as a descriptor.

It's not, but it is "Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning."
clinically significant impairment would suggest more than just a very mild impairment

You said you cannot get a diagnosis of autism unless it seriously impacts your life.

Yes significant is more correct ie not insignificant. That is very different to ‘severe ‘. But either way, the diagnositic criteria do not consider ‘impact on life’.

I think there's a big difference between significant and severe, though.

One implies a definite and notable impact, and the other implies an extreme, debilitating impact. Significant is also more neutral.

The offense comes from assuming you can understand somebodys struggles with how they appear to be functioning socially.

And it is all very relative.

My friend has a semi verbal young man who you would term 'severely autistic' as in that he would be highly unlikely to ever be able to look after himself. But he is the happiest young man 99.99 % of the time as he is simply unaware of his own limitations and is surrounded by alot of love and support from his large wider family.

Another friend has a super bright 15 year old who, if you meet him, you would think has the world at his feet. But you only ever meet hium when he is feeling capable of presenting on top form - the rest of the time he is in his room, or melting down, or self harming, and he hasnt been able to be at school since year 5, and it took 4 years to get him an EHCP because the masking in primary was such that he 'wasnt any problem' there. The EHCP has since proven to be useless as there are no tiny schools which do not overwhelm him so much that he can cope with them which cater for kids who are academically very capable.

the label of severe and mild seems to be very much in the judgement and eye of the labeller, not the lived experience of the person. And if you are more aligned as person number two above, its pretty insulting to have someone suggest that you have 'mild' autism because you are academically able and can hold a conversation.

However I do think that there should be a distinction between the two, as the needs are very different. Im just not sure what that should look like

The issue is there doenst seem to be an socially acceptable widely used term that explains how severe a disability is.

For example my brother has downs syndrome. You either have the extra chromosome or not. But I often find myself trying to explain that he is severely disabled and not the typical representation you might see on tv of someone with downs. We often hear older people say 'ohh he has it alot!" Which makes us laugh. But how should we say it? Hes very downs? He actually has a duel diagnosis with autism which i never mention because people don't believe you. But I would probably say he is severely autistic and also has downs and he is very disabled.

When it come to people being offended by terms I think people focus on the words people use rather than the intention. I've heard people use outdated words but clearly have no malice just like I know people who always use the newest socially acceptable terms but are actully racist/misogynistic turds

Hmm. In case anyone is interested, looking it up on the National Autistic Society site, I got:

"According to the DSM-5, the features of ‘autism spectrum disorder’ include:

• criterion A: persistent deficits in reciprocal social communication and social interaction
• criterion B: restricted, repetitive patterns of behaviour, interests or activities
• criterion C: symptoms must be present in the early developmental period
• criterion D: symptoms cause clinically significant impairment in social, occupational, or other important areas of functioning
• criterion E: these disturbances are not better explained by intellectual disability or global developmental delay."

Having a not insignificant impact on your life, doesn’t preclude a range of different levels of impact. Having to wear glasses for short-sightedness has a significant impact on my life, but not as significant as if I were completely blind.

Clinically significant usually means meets clinical criteria. The impact doesn’t have to be “severe” for an ASD diagnosis.

You can't. But that doesn't mean that, with support and care and help, you can't live a fulfilling and "successful" life.

My son was given a diagnosis of autism and I would say he also has 'sailed through school'.

Looking at these criteria I would say that he now doesn't meet them at all. He's 12 now and we were given the diagnosis when he was 9. I have always questioned it. Could that be the issue? Could the medical professionals involved be too quick to give out a diagnosis?

We referred him for assessment based on the opinion of one teacher who said she thought it would be 'important to rule things out'.

At the time his report had a number of inaccuracies in it and when I questioned it I was told I could put him forward for reassessment but that it would take years. We've just parked it for the moment. I have spoken to my son about it and he doesn't believe he is autistic (based on reading about it). He's happy, is involved in a few different sports, has lots of interests, etc. If he develops any problems in the future we'll deal with them as they arise. He is really disorganised but it's something we're working on.

I work in a school as a TA and there are definitely kids who have diagnosis of autism but seem to thrive in the school environment.

Autism is part of Down’s syndrome in about third of people with Down’s syndrome. Learning disability and autism are common symptoms of many genetic syndromes.

Your original post still doesn’t make the
point you seem to think it does.

What you seem to be saying here is we can’t compare levels of suffering for those with autism but we can compare suffering associated with autism with that of cancer?

Im pleased your experience of cancer was such a piece of piss, but I’m sure you know this isn’t the case for everyone. Others suffer physical, emotional, mental and spiritual distress, and many die as a result of their disease.

Nobody said cancer was special or sacred. I said your example using cancer didn’t make the point you seemed to think it did because you were doing some shoe-horning acrobatics to make it fit your narrative.

Ironically, in reference to your last sentence,
you’re very dismissive of the disability of cancer but consider autism so sacred that you need to police the language.

I work in a school as a TA and there are definitely kids who have diagnosis of autism but seem to thrive in the school environment.

Probably because school is routine and predictable for many - you do X and Y and Z at the same times everyday. I thrived in primary for the same reason, but unfortunately it all started to fall apart in secondary when things became less predictable and more student-led. University was a disaster.

There's also the fact that many children mask successfully in school and then fall apart at home. My teachers described me as quiet, a pleasure to have in class etc. but at home it was very different and I regularly had meltdowns and shutdowns because of the stress of masking all day.

One issue with diagnosis is it is often carried out by someone just looking at/assessing for autism, especially if done privately. They may not ever have been trained in other conditions so they don’t have the ability to consider differential diagnoses.

I work in a school as a TA and there are definitely kids who have diagnosis of autism but seem to thrive in the school environment.

my dd thrived academically in primary school. She was loved by teachers, amazing in the classroom yadda yadda.
She struggled with friendships, but there was a nice group of girls in the class and she was one of them.

That was all fine when she had good teachers who had tight control of the class. It badly fell apart in year 5 when social issues were allowed to take over. It recovered in year 6 with another good teacher. She flew through an 11+ exam and SATS with high marks.
She masked extremely well. But at home I could see the cracks and we saw her unmasked and I began to suspect she was autistic.
I mentioned ASD a couple of times in primary and they were surprised and said no, would not get her put forward for assessment.

the puberty and secondary school completely undid her.
She was diagnosed at 16. With support of her school.
I have heard stories like hers repeated in many families. Bright kids, not falling behind academically. Masking well, stable school good teachers with calm routine based classrooms.
Then secondary and puberty and the masks can't hold.

There's also the fact that many children mask successfully in school and then fall apart at home.

Masking is another one of those things talked about as if only autistic people do it. I am sure most teachers spend the day masking too! I agree it is exhausting to be put in a position of having to do it.