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.

I was talking about this just the other day. As a supply teacher I'll go into a class and be told 'x child is autistic' as if that's enough information to go on, it isn't.

The other day I had 2 autistic boys in the class. One can't do eye contact or be touched, obsessed with rules, get frustrated very easily. Other one loves eye contact and wanted to cuddle me all day, loves breaking rules to make others laugh. They are completely different to each other and have different needs, just saying 'they are both autistic' helps no one including them.

@salviapages that’s not a diagnosis issue, that’s a school issue. Surely the children have IEPs so you can see or be briefed as to their particular needs.

@Figgit yes if I was taking over as their teacher I would have access to these, but supply teachers arrive in the morning and if we're lucky a TA will be there to briefly tell us of any children with SEND. I'm saying this kind of brief overall diagnosis doesn't account for the huge range of differences, so I can imagine as a parent telling someone your children has autism isn't very useful

Eh? But a parent won’t be telling you that as a supply teacher!
No two people with ASD are exactly the same. What’s the solution - give all of us a unique diagnosis?

I totally agree. The blanket diagnosis of ‘Autistic Spectrum Disorder’ doesn’t help anyone in understanding the diagnosee’s needs. Where are they are on the Spectrum exactly? Level 3, Level 1?

My DS has a diagnosis of ASD and an intellectual disability. I struggle to understand it as I don’t know if the ASD is the reason he’s not interested in learning at all and has totally shutdown due to very bad experiences at school from when he started, or if he really can’t learn due to his intellectual disability. If it is a topic he’s interested in, he has reams of knowledge about it and speaks very eloquently about it and you’d would be shocked he apparently had an IQ of 68 but he’s also very like an 8-10 year old (at 19) in terms of behaviour with associated SEMH issues.

It is extremely frustrating.

I completely agree. I teach and we have 4 children in this cohort with an ASD diagnosis.
All 4 children are completely different and require totally different support.
At one end of the scale one child needs nothing more than instructions clarifying and checking on every so often. At the other end is another child who has their own separate work space and a 1:1.

Just a label of autism doesn’t really help.

I agree, I work in a school and when we are told a joining pupil is autistic it doesn't tell us much without further detail. We have 2 diagnosed autistic children in our class. One doesn't need any extra support at all, he's in the top reading and maths groups and is good at sports is happy pretty much all of the time as long as you spend some time each day talking about hoovers with him. He has good friendships. I imagine him in future in a very successful career and a fully active, self sufficient member of the community.

The other child, who I work 1:1 with is verbal in that he can say certain simple words to try and communicate when motivated and regulated, other times he has no idea to explain what he needs. He does not have the ability to have a 2 way conversation, will throw himself to the ground, cry and scream if things aren't exactly as he wants them. Doesn't engage with the other dc in the class at all, it's almost like
they don't exist unless one of them has something he wants. He isn't able to throw or catch a ball, hold a pencil in the pincer grip etc He will never be able to live alone or even go out alone as I can't see the sense of danger eg roads changing. It's basically like having a really large toddler in many ways.

The spectrum is just so broad that Autism alone doesn't tell you much

what an interesting discussion.

We think my dd aged 14 is on the spectrum and are pursuing a diagnosis. She is not 'bad enough' to get an NHS diagnosis, so we are paying to go private.

She needs support as she has high anxiety and it costs her so much effort to mask that she struggles.

But she does not need the sort of support that OP is talking about.
It is almost like we need two completely different type of services for autism. One for kids like OP herself and my dd, and one for kids like the OPs son.

I think they got rid of functioning labels as they weren't helpful in the way that people with 'high functioning' or Asperger's diagnoses weren't getting the correct support as they were expected to be like NT people just a bit quirkier. I think they've discovered now that a lot of them were struggling a lot and were masking and actually needed more help than it seemed like on the surface if that makes sense?

My son is autistic and completely different to yours so I understand your frustration though.

It does sound to me as if your son has a learning disability as well though. Have you had a look on the mencap website? There might be useful information on there.

Even if he does have a learning disability diagnosis as well, it wouldn't change how he is, it sounds like he needs input from professionals such as occupational therapy and you need support on how to meet his sensory needs which may help with things like smearing. They may also be able to help with communication aides too. (Sorry if you have already gone down that route and I'm sounding bossy)

I found it weird when my son was diagnosed though, they sent us a letter saying he was autistic, he did a few OT sessions to help him learn some skills then we were just discharged from everything

Having said that I heard a podcast the other day arguing for naming the level of support. So your ds would be asd with high support needs. It was from Life Kit: Parenting. We're not broken.

StrictlyAFemaleFemale I am really interested in this way of describing autism as it focuses on the person with ASD and need rather than the perception of others/the neurotypical. Off to listen to the podcast.

I also know people who were diagnosed with Aspergers years ago and refuse an ASD label and will stick to Aspergers.

YABU and I’m sick of threads like this. Autism has hoards of different traits so no one case speaks for all. All individuals will vary. I have it and so do my 3 children. We vary hugely. I also work with children who have SENs. You don’t just stick them under an SEN label but look as them and their need as individuals. Autism should be no different.

Some people have learning difficulties with their autism some don’t, some have mental health difficulties, others don’t. My dc has been hospitalised several times due to her autism. Like many autistic girls she has Anorexia and other mental health problems.She has other learning difficulties too but attends a grammar. Not sure why her autism doesn’t count because her difficulties don’t warrant a 121. If you are autistic you are neurodiverse and will be facing challenges. The generic label says that.

Also many women and girls mask and hide their autism. Not validating their autism because they don’t display it the right way is hugely damaging and I suspect why so many struggle. We are finally starting to validate how autism presents differently in girls, gate keeping isn’t helpful.

@Barn0w1

YABU and I’m sick of threads like this. Autism has hoards of different traits so no one case speaks for all. All individuals will vary. I have it and so do my 3 children. We vary hugely. I also work with children who have SENs. You don’t just stick them under an SEN label but look as them and their need as individuals. Autism should be no different.

Some people have learning difficulties with their autism some don’t, some have mental health difficulties, others don’t. My dc has been hospitalised several times due to her autism. Like many autistic girls she has Anorexia and other mental health problems.She has other learning difficulties too but attends a grammar. Not sure why her autism doesn’t count because her difficulties don’t warrant a 121. If you are autistic you are neurodiverse and will be facing challenges. The generic label says that.

Also many women and girls mask and hide their autism. Not validating their autism because they don’t display it the right way is hugely damaging and I suspect why so many struggle. We are finally starting to validate how autism presents differently in girls, gate keeping isn’t helpful.

You seem to be agreeing with the OP.

[quote wiklowarrior]@VividGemini Sorry to jump on your response but what would you say to someone you're apologising to in public?

I often say 'So sorry, he's autistic'. And sometimes people are very nice and say 'oh such and such is autistic and they've just got into uni'. Or 'oh my granddaughter is autistic and she works at such and such'.

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 [/quote]
I'd just say 'disabled' rather than autistic so you don't have to listen to how their neighbours son is the next Nobel prize winner.

No I’m not. Re the one case speaking for all I mean cases who perceive their autism to be the real deal and somehow more worthy of the diagnosis than others.

Autism varies and the struggles can be huge for those without learning difficulties. Separate labels just belittle that.

Ds was diagnosed just after he turned 2. They told me he doesn't seem to have any additional learning disabilities. I remember going home and thinking but what does that mean? At the time he couldn't communicate at all , was violent and a danger to himself.

Now at 8 he masks so well people don't realise he has autism at all but when he was very young in some situations I'd just say he has a learning disability so , as a pp says I didn't have to listen to oh my neighbours son has that but is at Cambridge now or like rain man? Is he really good with numbers?

My dsis is a learning disability nurse and she definitely isn't out their in the community supporting people with dyslexia so .

It's rare that I have to say anything in public these days but I'll never forget the disapproving looks we used to get.

Personally no. My dd presents differently on different days. Some days her support needs are much higher, others they are not. She in herself has a spectrum with asd. How would you manage a case like that? Would you base it on what professionals see, or what parents and family see, or school etc.
There was a reason functioning labels were done away with, and because you cannot apply the same label to the same individual consistently. To then say we need to start adding more labels, we're then taking away the validity of those who don't seemingly to the outside world struggle. That's not right.

Very quickly
Learning difficulty = dyslexia, dyscalculia, etc (and includes ADHD)

Learning Disability = "reduced intellectual ability"

MENCAP has a good explanation
www.mencap.org.uk/learning-disability-explained/learning-difficulties

I truly believe these "low functioning: children have a learning difficulty BECAUSE of their very severe ASD, not in addition to it. Like the OPs son is actually quite decent escape artist involving cognitive ability. They can't learn as others do because they are so significantly impacted by their communication impairment. But they have the same diagnosis as the savants and the slightly quirky maskers (who are all significantly impacted by their ASD in their own individual way). It seems crazy that there isn't a separated diagnosis.

• learning disability

[quote Bingbong21]@TowandaForever and in many ways removing the aspergers term hasn't lead to any more support at all, in fact it's made it harder as many LAs and areas have ended up having Autism+ policies which now blocks support for all autistic people unless they have an additional diagnosis or diagnosed learning disability.[/quote]
Always a lack of money and therefore support.

@CrumbsThatsQuick

I truly believe these "low functioning: children have a learning difficulty BECAUSE of their very severe ASD, not in addition to it. Like the OPs son is actually quite decent escape artist involving cognitive ability. They can't learn as others do because they are so significantly impacted by their communication impairment. But they have the same diagnosis as the savants and the slightly quirky maskers (who are all significantly impacted by their ASD in their own individual way). It seems crazy that there isn't a separated diagnosis.

My son's the same he amazes me with the things he figures ,out yet at eleven years old,he's totally non verbal can't read or write has only been out of nappies for the past two years or so at a special school for children with severe and complex learning disabilities .

The blanket diagnosis of ‘Autistic Spectrum Disorder’ doesn’t help anyone in understanding the diagnosee’s needs. Where are they are on the Spectrum exactly? Level 3, Level 1?

UserOfManyNames I think we need to move beyond levels and move to a model focused on needs, which are pretty much individual. Levels would be far too limiting and simplistic.

In an educational setting an ASD diagnosis should alert a teacher covering a class for instance to see a 1 page (or something like it) which summarises needs... and which might also say that they change day to day, hour to hour.

My child was exactly like your child. She got additional diagnoses of learning disability and ADHD.
She stopped using nappies at 9-10 yrs old, but we still have accidents on at least a weekly basis.

She had a lot of help from specialised health care workers who also trained people in her nursery and at school to help her to learn basic skills like getting dressed, go to the loo, eat her food.

She ran away all the time, climbed everything and jumped into the sea at any given opportunity.

It took some exhausting years to work on that. I love her and spend a lot of time to show her that I love her so that she feels secure and safe.
And yes, I do tell her off when she does something wrong and she does understand.

She has very little language: a few words and some echolalia.

And yes: her autism is wildly different from her sibling’s Asperger, and mine.

I say that she is Low Functioning, because she is.
Me and her sibling are High Functioning; we speak, interact, work, go to school etc.
Her challenges are a world away from our difficulties.

The difference that stands out between OP and her DC, the 2 dc I gave in my example and others I know and/or work with, and many of the examples here is this - The OP knows she is autistic, she knows what that means, that it can cause her struggles. Over time able to learn coping strategies and the diagnosis it's self possibly helps her understand herself and the things she finds hard better. The child in my example also knows. He doesn't really understand it because he's 6. The NT dc in the class don't understand it either but over time he will grow to. OP's dc and the other dc in my example will never be 'aware' they are autistic. They don't have enough understanding of the world, of concepts, of the spoken word to ever realise they are 'different' or grasp what it means. It's way beyond their understanding. They will need other people involved in their life to manage triggers and to put in pace strategies to help as they won't have the ability to do this for themselves. As I said previously, living independently will never be an option. I hope I've explained myself ok without causing offence as it's a difficult thing to get from your head in to the written word.

Ds is 12, he knows he is autistic, he knows he is different. He isn’t able to do anything with that information because he doesn’t have the skills to process it, it just adds to his struggles.

He is in mainstream education with full 1-1 but he will never be able to live independently.

In a lot of ways being able to understand isn’t always good.

But what I hate about these threads is it can easily become a race to the bottom. It needn’t be. Ds struggles may be different to those of the OPs son but that shouldn’t invalidate either. Nor should be friends struggles be invalidated just because she was only diagnosed in her 50s.