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.

Autism is dx (currently) by the triad of impairments not two. Yes all three vary but are present and in some people very present all the time.... those with severe autism.

I didn't say autism is a learning difficulty. My view is that autism is a disability in itself which can also be catastrophic without mental health problems. Mental health and autism shouldn't be confused or conflated.

@Lougle I understand that your children have mh needs and I'm not saying that autism for them doesn't play it's part but not everyone with autism has mh needs. Mh needs are not part of the diagnosis. You can have autism and not have mh needs.

@Attictroll

These may be helpful whilst you're trying to relate what you're reading to your son's presentation.

The spectrum, a simple explanation
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

The spectrum, a more adult explanation
neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/

Sensory behaviour, this may explain some "quirks"
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?

A simplified explanation of masking is when a child or adult presents themselves as NT, whilst struggling to do so, but hiding that struggle inside. They ignore and suppress all unwanted sensory issues and strive to appear to be just like everyone else.
There comes a point, often daily, where that struggle cannot be contained any longer and the child melts down (often on coming out of school or arriving home) or the adult needs total, silent, no stimulus, alone time to 'decompress' often for hours because they cannot function any longer.

Diagnostic Criteria
"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”. "
More at www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences

Not saying that. Saying a diagnosis is often important to manage mental health needs. My dd is the same as Lougle and the MH is part of abd driven by the autism. Cahms did her diagnosis and her developmental history and MH issues played a big part.

[quote flashbac]"It has become apparent, not just to scientists but to many in the community, that autism needs dividing into separate conditions, starting with the reintroduction of Asperger syndrome, as an important differentiator between mild and severe variants. Contemporary autism discourse and research are both skewed in favour of the verbally able autistic population at the expense of the most vulnerable and, with the growing popularity of the neurodiversity concept, this gap is sure to increase. It’s high time that changed and that the lower end of the autism was treated with the seriousness it deserves. The wellbeing of some of society’s most vulnerable people depends on it."

www.theguardian.com/commentisfree/2019/aug/26/autism-neurodiversity-severe[/quote]
Hear hear

Mental health needs aren't part of the diagnostic criteria, of course. I'm just saying that my DDs' mental health needs arise directly from their ASD, so to say that they are not 'part of autism' is inaccurate, imo. It isn't always part of it, but often it is.

But they aren't part of autism. They are mental health needs not autism. Autism will impact on them and for your daughter in a clearly massive way but I cannot agree they are part of autism in the same way adhd isn't part of autism or hypermobility. Just because many people have them sho also have autism doesn't make it part of autism. Many people with autism are perceived as having a low intellect however many of these need more accommodations to learn and from an earlier age than they get. However ability or inability to learn isn't part of autism either.

@Barn0w1 I completely agree that if someone has autism it should be a huge factor in how their health (any health needs) are treated including mental health.

People with autism are more likely to have mental health needs but their mental health needs aren't autism.

So where are you planning on making that cut as I think my ds’s autism is pretty severe?The impact of on it on her life has been catastrophic. She’s not non verbal though so I guess to some on here would think she’d be deemed mild.

Her autism is anything but mild.

Personally I would class severe autism as those who are severely impacted all the time by their autism. Social interaction, communication and repetitive behaviours. If your ds is severely impacted by her mental health I would say she has autism and severe mental health needs. Eg autism and severe anxiety, autism and an eating disorder,

The distinction is important, it's different, it's a different diagnosis and a different meaning conveyed with it. It doesn't mean I don't think your ds should get support or funding etc. Having a way to easily communicate to others that someone has autism which equates to "low functioning" or "severe" or "profound" is needed whether it's those terms or some other wording. There needs to be a distinction in the diagnosis as, as others have said the dx is now all but meaningless.

Thank you @BlankTimes I'll have a good read

So what are you going to say qualifies each level?

I find it quite offensive saying a diagnosis is meaningless. It’s not to us and several professionals worked quite hard on it.

That's what this whole thread is about though. That there needs to be separate dx for those more impacted so that it better describes their condition. Why wouldn't you want a separate diagnosis? You said your ds has catastrophic mh needs, why don't you want them recognised for what they are?

I don't need to qualify each level, for most people it is obvious that an adult who has extremely limited communication (possible non verbal ...), requires help in all aspects of life and will never live alone is different to someone who can marry, have a career and children yet at the moment the dx is the same (possibly with levels). How can that hold meaning?

My dd is high functioning but had very public meltdowns etc and I would simply say she's autistic, I also had to explain why she wouldn't nicely play with other children etc. to acquaintances. Things changed a lot for her, she acquired language at 4, at that point it was obvious she was very bright but she's selectively mute even as an adult

Dp's dd we also think is autistic but has other complex learning difficulties and medical problems so it's easier to explain she's severely learning disabled, autism is the last of her problems! She has a small vocabulary of around 100 words as an adult though not always appropriately used

She attended a school for complex needs with nurses on site

You are belittling the autism of those that present in different ways . How do you know whether verbal autistic people can have all those things?

And yes you do need to qualify levels id you are saying that anybody who isn’t non verbal doesn’t deserve their autism diagnosis. Many are living incredibly tough lives.

@Justrealised - severe autism for those who are severely affected in all areas, all the time is an easy category to create and I totally understand why people want this.

The difficulty is some people are severely affected in one area, moderatley in another and mildy in another, or severely in two and moderatley in one or any other combination.

There is also a difficulty of using mild for something that has to limit and impair daily function to meet the diagnostic criteria.

@Barn0w1 I wrote possible non verbal, should have wrote likely non verbal. Some people are classed as non verbal even with some verbal language as it isn't used for effective communication. I also haven't said verbal people don't deserve an autism dx, I said the people most impacted by autism need a separate dx. I don't need to quantify levels to say this.

I just wondered how well respected that self assessment quiz at the begining of this thread was? I just got a high score (38). I have never suspected myself to be autistic (and still don't). However I am extremely introverted. The questions seem to be very loaded at introverted traits. Obviously there is some cross over but not all introverted women are autistic. I wonder what what other things would be used in a diagnosis? I also suffer from sensory overload and face blindness.

Ok so my dd is severely impacted by her autism but is academically able and verbal so unless you’re going to elaborate on your levels you can’t really come out with such a sweeping inflammatory statement. It’s meaningless without some detail.

@Elephantsparade I personally wouldn't use the word mild. I agree that mild isn't a good descriptor for something that you need a dx for in the first place.

How the other groupings/ naming or even if the rest should be grouped isn't my concern nor would I want it to be.

The NCSA are lobbying for the dsm to be changed to reflect severe but haven't concerned themselves with other groups. For me this is my train of thought too not because I'm not interested but because It isn't my priority.

Trigger MH
I don’t know the answer. Levels might help with the general public. I think a lot is about recognition and all needing to fight hard to get support that we need for ourselves or loved ones.

I have adult 40 autism diagnosis, missed at 16 . No follow up and no social skills training. As you can see from just this post I can understand that I have autism and a level of ability. It does seem strange that I have the same condition/disability as someone that cannot speak and 24 hours supervision to be safe.

However appearances can also be deceptive. I am aggressive with my parents. I have melt downs. I have no friends, can manage acquaintances but not get beyond that. If something happens in my flat I ask my parents. I honestly don’t know whether if something really serious happens that just affects me I would be able to get help from anyone except a professional or my parents. So if there was a fire I would get help from neighbours because it could affect them. If I broke my ankle parents or wait many hours for ambulance rather than be able to contact anyone - it only affects me. I hate myself and autism.

My mother once asked me how I will cope when they can jo longer help or die. I didn’t say but we both know that I could be a danger to myself and would wish for death. (Underlying MH but not sure how or whether I will be able to ask for help due to autism)

I don’t care if I was diagnosed with Asperger’s, ASD, autism or level brought in. There needs to be tailored support available across the country through health and social care and education but of course that costs money. Though it is very hard if we can all advocate including for those with completely different experiences that might help. That means I need to push for support for OP and son, and if possible though it may not be due to the sheer effort of care, others need to advocate for people like me.

@Barn0w1

Ok so my dd is severely impacted by her autism but is academically able and verbal so unless you’re going to elaborate on your levels you can’t really come out with such a sweeping inflammatory statement. It’s meaningless without some detail.

Can you really not see how someone verbal and academically able is less impacted than someone with extremely limited communication with a education age years below their chronological age?

The dx is meaningless as it's meaning is so different for each person it doesn't convey an adequate description.

@Justrealised - thank you for elaborating.

It does feel a very broad diagnosis and sometime i think it is hard to see a core that makes all autistic people autistic and not just a random bunch of people with different difficulties and abilities.

Its a shame support is so difficult to access. I dont think people would give much time for this debate if services and support were adequete.

I already feel anxious about whether there is enough supported living available for him as an adult.

[quote Justrealised]Ncsa statement of changing the dsm and why it is required. Counter points to the comorbid learning disability argument.

www.ncsautism.org/dsm?fbclid=IwAR15MRfsTXr_wkQMWkSTEkMzeZxQswx5vE5p_1IK4tvtDcI-s0L85hvN6Dw

YouTube webinar on changing the dsm (which will lead to changes in the UK). The video outlines some vital points

lm.facebook.com/l.php?u=https%3A%2F%2Fyoutu.be%2FGVxE5RH0ycg%3Ffbclid%3DIwAR3ve_0sSy2_ZZbgSdF1kZzAr7htpXiHlibKnJ8Otw5Esb3h_9mbOfdhtK4&h=AT1BK6q2XqbBgQ3E3pj7ifN-t02j81XHcU1Mkc8gIQfVX_G2c3v4OEyAYQiNOAwx_IsQ3MVb98nZ3ljEgXXlQL9UEyRzmUTeVjWYwKZA-2fPJi6zYfLJhikQbHVtWMQiKWQs--Mt56CPULi6L-2L9p_s0UlUVF3TUTs[/quote]
I completely agree with this and am glad to hear their us lobbying afoot to make this type of change.