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'm an autism researcher. I agree there needs to be some differentiation of levels of autism, by support needs or communication or learning disability.

But I saw a big Twitter pile on from the 'autism activists' when there was even a suggestion that it would be useful to identify subtypes of autism. I think the activists see autism as an identity and any change to diagnosis would threaten that identity. Which is very unhelpful to people like your son.

wiklowarrior I think a lot of the anxiety parents and carers have around 'labels' is about how other people view and make judgements about them and their children. Like you say, you want to know what to say to people to explain your son's behaviour, so that they'll understand. My daughter has developmental trauma because of her early traumatic experiences. In some ways this presents similarly to autism, but it is obviously deeply personal, not understood by many and with much additional stigma - so I would never say it to people unless we knew them very, very well. What I have trying to learn (and I'm A LONG Way from achieving this) is that I don't need to explain or justify or excuse my child to other people. They won't understand and I can't expect them to and don't need them to. This anxiety comes from my need to be 'seen' and understood and my own ego and insecurities. What my daughter needs is complete acceptance from me and the people who love her and the right support from school staff and professionals working with her and as long as she's getting that I need to learn to let the other stuff go. It sounds like your son is where he needs to be, getting the love and support he needs. I know it's very hard, but for example, if he accidentally hurts someone or damages something could you just say 'I'm so sorry he hurt you, is there anything I can do to help?'

I suppose my son's presentation is such that it has a profound impact on not only him but everyone around us, especially family

I am in my 20's and there's been so many nights I've sat awake, wondering with sheer desperation as to how I can possibly prepare for me being dead. What if I die? That plays on my mind so much. There are things in place here and there but who will advocate for this boy, soon to be a man one day, who can't even point to something? I'm sure most parents of autistic children think of that but I do think it's on another when your child is like DS

I'm 23 and went into hospital recently by ambulance for surgery. Luckily i was out of hospital within a week. Do you know the first thing I said to my husband? The life insurance, I'm with LV. Mumbled something about not getting paper communication so don't forget the company name I don't remember any of this! Too high on morphine at the time

My DD was diagnosed at 4 with autism and they said a global developmental delay. I suspect if I'm honest that I might fit the profile of what was previously called Aspergers. I think it's ridiculous that you can't say that someone's autism is severe, or more disabling, than others. I've read about "spiky profiles" but surely if one person's spikes are all low then they are more severely affected than someone's who are a combination of the 2? I don't understand why that if one person is unable to communicate at all, compared to someone who finds communication challenging but can do it, you can't say that one is more severely affected than the other.

You could possibly use the term developmental delay along with autism if you wanted an easier explanation for strangers @wiklowarrior ?

I think part of the argument over dropping Asperger's was that people relate it to 'mild' or 'severe' autism. Many people with Asperger's felt that it was unreasonable to label their autism as mild when it actually had a huge impact on their life.

Personally though, I do think there need to be some better universal sub-descriptors. The fact that people default to trying to find them (e.g. the controversial high/low functioning) shows that there is a need for this.

As a specialist teacher, when I'm reading paperwork for a new child I like to know:
What is the intellectual impact (learning difficulties or not).
What is the impact on speech (average+ verbal ability or not).
What is the social impact (relates in a group or not).
Is the profile demand avoidant (likes direct instructions or not).

Those are useful broad categories for me, but of course every child is different and there will always be very strong arguments against pigeon-holes.

I thought things like dyslexia were classed as learning difficulties, whereas the term learning disabilities is used for people with lower intellectual capacity (I was told years ago it ment IQ below 70, but imagine that is no longer used as a benchmark as the system of IQ is somewhat flawed.)

I agree that autism could do with more descriptive categories, but think it needs to be more complex the high / low functioning. DS(5) has autism, he is verbal, academicly able, full of animal facts, and you could watch him on a playdate with another child and not even realise he's autistic, as you've not seen the planned I've put into making sure it's a setting he can cope with, or how he is afterwards. In that moment he is 'high functioning'.

In contrast, put him in a classroom with 30 other kids, and he will spend most of the time hiding under a table, unable to speak, watching the door for a chance to run, and is liable to attack anyone who gets I his personal space at the wrong time. In that moment he's 'low functioning'.

I agree OP. It's all very well saying 'it's a spectrum' but some more detailed nuance would be helpful to all in my opinion.

But how do you differentiate? On what criteria? It’s all so broad.

Ds is 12 and is in mainstream with full 1-1. He is able to access most of the curriculum now with that 1-1 but it’s still a struggle. He still needs Constant supervision and help with everything. He may be in mainstream but he is severely impacted.

I know others who are in specialist but actually have more “life skills”/independence than Ds.

Trying to break it down just doesn’t work!

Nail on the head there @parietal. The Twitter/ASD/#actuallyautistic advocacy does exclude those with high support needs in the areas that OP is describing.

spanieleyes I guess the thing is to try and give parents the time and opportunity to describe their children's strengths and vulnerabilities and the support they need to be able to eventually come to a place of acceptance so that they can do this without it being horribly distressing and traumatic. I'm not saying that a change in the diagnostic criteria wouldn't be helpful, but I'm not sure it should be a priority given the state of SEN provision in the UK currently. A more defined label might help give schools a more accurate 'heads up' as to what level of support a child might need, but I think working towards a system in which we support individual children and their specific needs rather than their diagnosis wouid be far more beneficial in the long run.

I agree with you. I have worked with kids with autism and the way it affected them varied hugely. I don’t quite understand the removal of Asperger as a diagnosis. Other difficulties have sub categories of mild, moderate or severe so why not autism. It’s not to say that people with Asperger’s don’t struggle enormously but that the impact on their day to day life is different from someone who can never live independently.

You shouldn't need to apologise for your son but I know that is easy for me to say and it must be so difficult when you are with people who don't know your son.

I have friends with a child who sounds similar and they tell people she has significant special needs, they don't tend to use the word autism with strangers as there is even more ignorance around girls with autism.

Can I ask how they diagnose someone who is non verbal? Is it through asking you about their behaviour?

@SwanShaped

Can I ask how they diagnose someone who is non verbal? Is it through asking you about their behaviour?

They ask you about them and their behaviours, but they also observe them

In my son's case, he was due to see a paediatrician, do a sort of play test for observation, then see the paediatrician for the outcome of that all put together - DS was diagnosed on the spot the first time we met the paediatrician. I remember his paper saying 'Child clearly fulfils the diagnostic criteria this morning for Autistic Spectrum Disorder'

@SwanShaped multidisciplinary observations/assessments and history from parents, other professionals that have already been involved (eg nursery, paediatrician, speech snd language therapist)

Thanks both, that’s interesting to know. I watched a programme last night about Paddy something or other, his family and autism. His wife got diagnosed by filling in a questionnaire.

Maybe a qualification on severity, like mild moderate severe, which I do sometimes see on paediatricians diagnostic reports. Or maybe an insight into impact, such as hugh, medium, low support needs as mentioned above.
But the issue is that it’s not that easy. My son, for example, is regarded as ‘high functioning’, probably meeting what most would think of as Aspergers. But his needs are significant. It’s a constant battle for understanding, because people think he’s bright, articulate, and so on, but he also has a very high level of need. That’s the challenge with ASD, narrowing, or sub grouping diagnoses will not work for many who have ‘spikier’ profiles.
Many professionals who work with our child, for example, have said he has severe ASD, as it impacts his life so significantly, but he doesn’t have a ‘learning’ impairment per se. The presumption that because he doesn’t, his ASD isn't ‘severe’, frankly, is incredibly upsetting.

@SwanShaped

Thanks both, that’s interesting to know. I watched a programme last night about Paddy something or other, his family and autism. His wife got diagnosed by filling in a questionnaire.

I did think that was incredibly odd. I think the questionnaire is actually used in adult diagnosis at least but it isn't just that, and a quick that with a Professor like she had surely

In Australia, we use levels - level 1 for "aspergers" and level 3 for severe Autism.

I work in this area and speak to many families who have a child on the autistic spectrum and I'm increasingly convinced that the biggest challenge the majority of them face is trying to explain to the outside world what their diagnosis actually means for their child. Because often something's happening and the family are struggling to manage it whilst knowing the world is waiting to understand and they need the world to understand to get their child's needs met. And there's no adequate shorthand for describing most children's needs. That's even before you get to the challenge of ensuring appropriate support for those myriad needs. Of course support should be child led rather than diagnosis led but within schools, the staff are people. So the class teachers, the dinner staff, technicians, office staff and so on, all bring their own experiences of meeting other people with autism and have preconceptions so a family end up struggling to explain to the child's form tutor whose own child has very high functioning autism and is at Oxford that yes, little Johnny is able to be in mainstream education but no he can't manage seemingly basic activities due to his sensory needs.

It's exhausting. My niece has no learning disabilities but her social communication and interaction skills are a wonder to behold. She's academically able and could fly through any lesson in high school (if it interested her) but actually, she'd probably rather tell you, the postman, the lollipop man, a stranger on the street etc what's happening with her menstrual cycle in excruciating, forensic, medical detail before going and getting into a complete stranger's car to see exactly what stereo speaker set up they have.

I don't know anything about autism but wanted to say, OP, I understand your point and agree.

figgit you could have described my DS there! Your spot on

This is so interesting. I am deciding whether to investigate an ASD (and possibly ADHD) assessment for myself and I have a 4.5 year old DS who has a separate genetic condition which has some similarities with ASD.

The current thinking on describing the difference between presentation of people with ASD is high / medium / low support needs. High / low functioning is horrible and not useful.

As someone else has said, I don't explain why DS has acted in a certain way I just apologise if they have been inconvenienced. I think his needs are are obvious in his speech and his demeanour. Most decent people will accept an apology and move on. Anyone who demands an explanation for the behaviour of a 3 year old who is clearly struggling is being a dick

Sending you lots of luck though. This stuff is incredibly difficult to cope with especially when you are managing your own needs. Try to access as much support as you can

Autism is a spectrum but it seems that over the last decade (with a few notable exceptions) there’s been a lot of programmes and media attention on people at the higher functioning end of the spectrum, but very little about people with more severe autism.

Unfortunately I think this has led to many members of the general public having a distorted perception of just how challenging autism can be on the more “severe” end of the spectrum.

Maybe there was more to her diagnosis than what was seen on tv. I’m sure that the guy she chatted to wouldn’t flippantly diagnose someone like that. It did sound like she’d struggled a lot during her life.

I can see your point as well, figgit. I don’t know what the answer is but it does feel like there needs to be more of a differentiation rather than one term.