To think there needs to be a clearer diagnosis than just Autism?

[wiklowarrior]

As in, 'Autism such and such'.

I'm a professional woman, had a good job (before becoming a carer), married, nice home, friends. I'm also autistic, which was once diagnosed as Asperger's (and is what I was given). That's no longer the case now. As a child, I was eccentric to other people, always played alone, unless my nightmare routine was disturbed. Spoke extensively about my favourite things in great detail. Then you'd see more obvious signs. Overall though the entire thing leaves me exhausted. It's the masking that does a lot of that.

DS was diagnosed with autism before he was 3.

He can't speak a single word, and doesn't respond to simple language communication such as 'Get shoes'. He is a complete flight risk, would run into roads in a flash. He is in nappies. Never been able to toilet train him, despite numerous efforts (of which were all very obvious weren't going to work, because he does not communicate and doesn't seem to have a desire to). He is hyperactive, climbing another danger. He runs face first into walls. Attacks me, attacks other children and just anyone really. He destroys most things I've ever owned really. But very clever at working out locks and reaching high places. I see the frustration in his face every day and it breaks my heart. My own autism is exhausting.

Can you imagine then if I couldn't speak a single word, have the ability to use sign language despite years of effort? Couldn't use picture exchange? Couldn't even POINT to what I want or need? It's obviously very much a harder deal for him. His autism is severe. And I think a label for that would be useful without having to go into detail in multiple examples of telling people about him being autistic.

He does not attend the local SEND school specifically for communication disorders because he's too disabled by his autism. He attends a very good special needs school for a variety of very complex medical and autistic needs and it's the best school for him.

Yes I know masking is hard, even for those of us appearing 'high functioning'. But at least we have the option? Surely? DS and others like him don't.

@Latenightpharma I’d say Down’s syndrome isn’t really a spectrum disorder in the same way as ASD. Everyone with DS has a learning disability - no exceptions. And, as in the wider population, there are more and less academically able people. The big differences tend to arise when there are additional diagnoses, either health problems that hold back development or independence, or disorders like ASD, OCD or ADHD.

There have been two steps. First, the name Asperger was dropped, for good reason. Then concerns were raised about the term high-functioning autism, for many reasons well set out in this thread, and in any case it’s not in the DSM.

I agree OP. My son has an ASD diagnosis (would previously have been Aspergers) and ADHD (combined type). When his ADHD is controlled by meds he could pass for neurotypical, save for being a bit intense, and having poor fine motor skills.

I have a diagnosis of inattentive type ADHD (and consultant said I probably have ASD too) but generally pass as neurotypical, just a bit dreamy and slightly awkward.

Part of the reason we had our diagnoses so late (earlier would have been much more helpful) is that we didn't seem neurodiverse ENOUGH to be considered autistic. A lot of people I raised this with when my son was little said "oh no he can't be autistic" because their idea of autism was someone non-verbal, not toilet trained and/or a mathematical savant like Rainman. My son is 16 now and most of the time refrains from telling people about his ASD because of these sort of expectations.

Aspergers does not mean that a person isn't severely impacted by their autism. I was diagnosed with aspergers. I've been bullied all my life, hounded out of jobs, have depression and severe anxiety, can't advocate for myself, can't talk to other people and live on the margins of society on little money and with absolutely no support.

My aspergers son had to leave school in Year 7 after only a few weeks because he was bullied so badly, including physical stuff.

The 'high functioning' and 'low functioning' labels are offensive and ableist. I'd love to function highly

@Phineyj

DH considers Sheldon some kind of role model. Sheldon is shown to be significantly impacted by his ASD, though, isn't he, even if it's played for laughs?

Sheldon isn’t autistic. It was specifically mentioned he isn’t autistic. And he also isn’t gay even though he plays to all the stereotypes. He was deliberately written / played like this to show how meaningless stereotypes are.

Well, he's fictional so I'm not going to get too exercised about it.

@Forion

Aspergers does not mean that a person isn't severely impacted by their autism. I was diagnosed with aspergers. I've been bullied all my life, hounded out of jobs, have depression and severe anxiety, can't advocate for myself, can't talk to other people and live on the margins of society on little money and with absolutely no support.

My aspergers son had to leave school in Year 7 after only a few weeks because he was bullied so badly, including physical stuff.

The 'high functioning' and 'low functioning' labels are offensive and ableist. I'd love to function highly

Those labels are offensive to YOU. But to someone with a child whose ASD is so bad they can’t speak, recognise people or objects, or bang their heads against walls when they’re sick or in pain because they can’t communicate in another way, THEY MEAN EVERYTHING. This is what OP means when she says people with high functioning ASD have hijacked the whole discourse behind ASD.

I work in SEND and often think about this - it’s really interesting to see what autistic people and parents think about it.

In my job I find there is no good language to describe autism eg. although we all know that ‘severely autistic’ ‘very autistic’ ‘high functioning’ and other such terms are loaded and inaccurate it’s really hard to find any other shorthand for what you mean if you’re trying to quickly convey the nature of a child’s particular ‘profile’ of autism. To give an accurate description you have to give a long list of behaviours, which obviously is great and necessary in general but sometimes you are having a two minute conversation/handover with a colleague and you can’t go into a lot of detail about an individual. I also find EHCPs increasingly refer to ‘autistic traits’ or ‘traits consistent with ASC’ without telling me what they are - which is pretty useless as they could be any number of things.

I work with children who are generally able to access learning, a curriculum, a fairly typical school setting but my friend works in a residential care home for autistic young adults who are non verbal and will probably never be able to look after themselves - but certainly some of them can pursue intellectual interests of their own- it’s a completely different ball game.

[quote SomethingNastyInTheBallPool]@Latenightpharma I’d say Down’s syndrome isn’t really a spectrum disorder in the same way as ASD. Everyone with DS has a learning disability - no exceptions. And, as in the wider population, there are more and less academically able people. The big differences tend to arise when there are additional diagnoses, either health problems that hold back development or independence, or disorders like ASD, OCD or ADHD.[/quote]
DS sufferers can have average IQs. They are the ones you usually see paraded around in discourses about medical terminations / discourses about DS sufferers working or going to uni. Those with Mosaic often have no learning symptoms at all. But these individuals are ‘rare’. With ASD it’s the people with low functioning versions who are rarer (all research points to people with mild forms being the most numerous).

DS has a high-functioning, Aspergers type Autism profile. Although the diagnosis was a couple of years ago Aspergers was included in brackets.

He currently copes with mainstream primary school, but I don't work because he can't cope with childcare on top. He has a lot of intellectual curiosity and applies it well. He's superficially articulate but had a delay as a young child, and there are subtleties that are "off". He gets more support and adjustment in school for being very dyslexic with dyspraxia than the autism.

The fact that he has an autism diagnosis means it is recognised that he has a life-long impairment in living "normally" His greatest hinderences are sensory, and it's the constant accumulation of things like pens scraping on paper which exceeds his ability to regulate. His tics and coping strategies are subtle and he masks all day and frequently explodes when he gets home. Sometimes you just see it in his expression as he walks out of the school doors and know it's going to be a long evening.

His challenge is that the world sees a fairly normal, capable, intelligent person and expects normal outcomes from him.

I grew up with a relative who would probably now be described as having a severe global developmental delay, basically a toddler in an adult's body. Many of his difficulties are common in "low functioning" autism, inability to communicate effectively, very poor independence and self-care skills, impulsive, needing 24 hour care, low muscle tone. Very, very different challenges to the ones that DS has.

A couple of days after DS's diagnosis, Ken Bruce spoke to Jeremy Vine very movingly about his son Murray who is non-verbal and significantly impacted by apraxia. After many years, Murray was able to communicate using technology and had recently won an award for his poetry, hence the interview. Intellectually he has good capability, but that was locked inside him until an accessible way to communicate was avaliable.

Autism is a huge, ambiguous word, and highlighting the nature/ extent of difficulties would be helpful. High/ low function are too ambiguous too. DS may be high functioning when he's explaining quarks, but he isn't when he's being guided, howling out of the pub because he was sat at the wrong angle to a speaker and the singer's voice was just the wrong pitch to be able to tolerate.

Functioning labels are outdated and for good reason.

An autistic child who can't communicate could be incredibly intelligent and live independently.

An autistic child who can communicate could be academically challenged and not able to function independently.

My son is academically gifted, but he struggles to access typical mainstream education. Somebody meeting him for the first time would see the articulate, gifted child.
What they won't see is his explosive meltdowns when he can't figure something out. What they don't notice is his ecolalia. They don't have to talk him down when he wants to die because living in his head is torture and he doesn't know why he feels angry. They don't see what his (wonderful) teachers adapt to support him.
His ability to function also fluctuates on a daily basis. One day he can do many things. Others he doesn't leave his room, speak to anyone and is stagnant. Many autistic children are the same. Deonding on sensory in/output and demands of the day.

You can't put a functioning level on something that fluctuates.

Labels are pointless. They do nothing to help. They put people in boxes, and boxes aren't helpful. We don't need functioning labels, we need the sapce and time to allow autistic people and their advocates to tell us what they need.

Some commenters are conflating ADHD with autism, ADHD us not an ASC, but is a neurodivergence.

As for 'aspergers' I'm glad that term has gone. The man was a nazi and killed autistic children, his name has no space in the community.

As for the commenter who spoke against self diagnosis, hear this: self diagnosis is valid. Many in the world aren't lucky enough to have an NHS. Diagnosis is expensive and inaccessible for many. Self diagnosis is VALID.

My dd has autism/adhd/Tourette's and severe anxiety all intertwined. She's super intelligent and masks really well at school. I've had to start explaining executive functioning and how her lack of comprehension and slow interpretation of things affect her learning. That's where her disability lies.

@Ozanj Please don’t use the phrase “DS sufferers”. It’s really insulting.

I’m not sure where you get your information about IQ levels in people with DS, but even those who end up as activists and spokespeople have some intellectual impairment. What they don’t tend to have is the additional health problems and diagnoses that affect many people with DS.

i just don't think saying autism is enough, especially when there are so so many of us who are fully functioning, even if it's masked

I still use the old diagnosis of Classic Kanners Autism when referring to my son. I say my son has Classic Kanners Autism which is at the most severe end of the spectrum. It usually stops people from saying oh is he good with numbers, or what’s his ‘gift’, whilst helping them understand his appearance can be deceiving.

But quite honestly Op, I have to say that over my sons decades I’ve really only ever met with kindness and acceptance of him so I’ve not really encountered many unkind situations and I’m not really one to bark at people who try to get things right because they are kind but perhaps get it wrong.

Well that is apart from one in Disney Paris when a German man heckled my son whilst he was sticking and waiting to go on the Dumbo Ride. The bloke was sitting on a wall and was being extremely obnoxious when all of a sudden I saw him doing the best impression of Humpty Dumpty I’d ever seen when someone in the crowd stretched their arm forward and toppled him off the wall backwards. He was quiet after that.

@Bonkerz

My dd has autism/adhd/Tourette's and severe anxiety all intertwined. She's super intelligent and masks really well at school. I've had to start explaining executive functioning and how her lack of comprehension and slow interpretation of things affect her learning. That's where her disability lies.

I love a big giant tigger who has autism/epilepsy/Tourette’s and anxiety.

❤️

@WeeTattieBogle

i just don't think saying autism is enough, especially when there are so so many of us who are fully functioning, even if it's masked

I still use the old diagnosis of Classic Kanners Autism when referring to my son. I say my son has Classic Kanners Autism which is at the most severe end of the spectrum. It usually stops people from saying oh is he good with numbers, or what’s his ‘gift’, whilst helping them understand his appearance can be deceiving.

But quite honestly Op, I have to say that over my sons decades I’ve really only ever met with kindness and acceptance of him so I’ve not really encountered many unkind situations and I’m not really one to bark at people who try to get things right because they are kind but perhaps get it wrong.

Well that is apart from one in Disney Paris when a German man heckled my son whilst he was sticking and waiting to go on the Dumbo Ride. The bloke was sitting on a wall and was being extremely obnoxious when all of a sudden I saw him doing the best impression of Humpty Dumpty I’d ever seen when someone in the crowd stretched their arm forward and toppled him off the wall backwards. He was quiet after that.

Like you, use classic autism to describe my son. I do it deliberately so that the person I'm talking to knows that I mean severe.

I'm ~ high functioning ~ and prefer the old terms precisely because there is such a difference between me and someone who can't speak or use the toilet.

Its why i dont understand the current push to get rid of terms like aspergers or kanners.

I think the level 1, 2 and 3 of autism is somewhat helpful but not many people would know what it means

I understand that there are varying degrees of impact on different days/ times whoch is hard and difficult but and here's the thing, there are some people who are impacted all the time. These people are losing out on funding, specialism, research and understanding. The dx has changed so much over the years and has almost become a fad.

Diagnosis shouldn't be self made, it takes a team of people to dx autism and for good reason too. Autism is a serious and debilitating disability which seems to have become trendy.

There needs to be separate dx.

I think your right op - sub sections are useful, though some people would disagree. I use term high functioning with learning diffs for my wee asd dude. It's a minefield though as some people pref different usage of asd to describe themself. One friend says she is autistic and another says she has autism as in a medical condition. Iv come to learn it's a personal thing how to describe yourself.

I think it's also hard now if you dont have an asd diagnosis, just learning difficulties or processing issues. It's almost like being left out of a club as so much support is geared towards asd

@Justrealised

I understand that there are varying degrees of impact on different days/ times whoch is hard and difficult but and here's the thing, there are some people who are impacted all the time. These people are losing out on funding, specialism, research and understanding. The dx has changed so much over the years and has almost become a fad.

Diagnosis shouldn't be self made, it takes a team of people to dx autism and for good reason too. Autism is a serious and debilitating disability which seems to have become trendy.

There needs to be separate dx.

Agree ,my son is severley impacted in every area, his level of needs does not fluctuate ,he needs 24 HR care seven days a week.

This is why the term Asperger is no longer used by the medical profession:

www.bbc.co.uk/news/world-europe-43820794

@eloquent you could have described my son.

But what this discussion shows to be is that it is incredibly difficult to sub-categorise ASD as it is so very complex.

I think I said it above, but will say it again. It’s not a competition. Our experience of ASD doesn’t invalidate someone else’s, just as theirs doesn’t invalidate ours. Personally I find the idea that somehow x’s situation is worse than y’s upsetting, distasteful and doesn’t help anyone.

"How do we differentiate between what's the Autism and the intellectual disability?"

I think the two are so intermingled in people who have both that you cannot separate them out. It isn't the case of having the difficulties of one and the difficulties of the other. However for ds you cannot support his learning disability without making sure his needs associated more with autism ( eg sensory difficulties, right environment) are met first.

@Latenightpharma @ozanj

I agree that down syndrome often comes with a similar spectrum. A close relative has downs syndrome and has very low communication, won't be able to live independently etc. The discourse about down syndrome is often of smiling happy people. Often discussions talk of those people who work in shops, can live independently and if you don't fit the cutesy image then support is very limited and your excluded from the discussion