Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

HFA is not the opposite of “severe” autism . You can be severely autistic and high functioning (ie IQ over 70)

I think maybe the issue with this for me is that this binary leaves out so many people, including me and my family. I've also noticed (not saying you've said it), that there's an assumption that everyone who is diagnosed as an adult is someone who broadly functions in line with NT expectations and struggles socially, but is otherwise independent.

My mum was diagnosed with autism aged 65. She cannot live independently, isn't always continent, has no sense of danger or boundaries, cannot work, isn't fully literate and now has a carer. She has put herself and me into plenty of dangerous and or life-threatening situations because she does not understand them, and I grew up in an abusive household as a result.

Mum is fully verbal, but can be violent on occasion. She has a social life and can manage aspects of her personal care, but not all. She doesn't fit into either of these categories often described on this thread, in the same way that Murray, from the new BBC documentary on autism doesn't. Despite my mum having at least level 2 support needs, she would have never been diagnosed if I hadn't been diagnosed later in life. Women are so often overlooked, despite it being 'obvious'. I was simply her carer, or one of the many abusive and predatory men in her life would 'care' for her.

I have level 1 support needs. I'm nothing like those needing 24/7 care, but I'm nothing like my mum either. I have better social skills than she does, but I'm way more anxious. I have rigid obsessions, she doesn't. I get easily tired around people, she doesn't. I cannot regulate my own temperature well or sense when I'm hungry, she can. Both of us, as well as anyone else without language delay prior to the age of three, are classed as what used to be Asperger's. The problem with that is that aspergers often becomes code for bad social skills, with the idea that the other impairments seen in ASD are basically absent from those who are classed as 'high functioning'. This isn't always true. Even if we end up using ASD versus profound ASD, I wonder whether the line would be drawn, at which age, and for whose benefit.

I've accepted that I'm always going to rely on community support rather than medical or government support for my disability, and I am privileged in that I'm articulate and can often (but not always) fend for myself. I'm worried though about people like my mum who seem to be neither here nor there when it comes to these debates, what are they supposed to be?

In regards to the learning disabilities dx I thought I'd share our experience.

Our son was assessed by a very well known ep/ cp (we were preparing for tribunal regarding school of his ehcp). I was sure he would come out of it with a ld dx but he didn't. The way that learning disability is assessed is via a series of different assessments looking at different areas of function. In some areas our son scored less that 0.01 percentile in others (like visual reasoning) he scored incredibly high. The scores are averaged together to get an iq. Below a set point is classed as a learning disability. In our child's case the score was between two extremely outliers and rather than giving an overall picture of what his abilities are we were told it would be unhelpful as it is representative of him. His autism impacted on the areas where he scored the lowest.

The Psychologist also explained that the way the tests are given isn't always appropriate for people with autism due to the nature of the disability. After lots of discussion the wording around our son is that the severity of his autism is such that it profoundly impacts him. He does not have a learning disability but often in discussions like this one it is assumed he does.

"He is mild and she is severe but some don't like reality and use of mild"

As someone who has spent 20 years in autism diagnostics - no, it's because it's wrong. Just because a person internalises their autism - doesn't showing "challenging behaviours" or have massive meltdowns all the time, just because someone has a surface ability to be social - doesn't mean they are "mildly" autistic. It means that just now, the context they are in, or the way they are understood, is working sufficiently well. So many of these "mild" children develop huge problems with depression and anxiety, school avoidance, burnout and total breakdowns. They keep going with limited support because people perceive that their issues are "mild" and then they crash. That friendship group that likes their quirky friend at primary often disappears into partying and social cliques at secondary and the autistic child is left isolated and called "weird" or bullied and vulnerable. It genuinely isn't as simple as a "mild to profound" linear spectrum.

"when questioned about the complete lack of repetitive behaviours/no need for routines etc...they were told you no longer had to have the triad of impairments as the DSM criteria had changed."

No, it hasn't. However rigidity of thinking can sometimes be seen in more subtle ways such as a difficulty parsing language or not coping with imprecision in instructions rather than the more obvious "rigidity" of sticking to a proscribed routine. There should be evidence of hyperfocus in certain areas which provide enjoyment. Doesn't have to be bus tickets or washing machines. Could be soap operas or English Lit or horses or manga (all common in girls) or football teams or gaming or pokemon....etc etc

That was a direct quote from the psychiatrist in the formulation/diagnosis appt when questioned whether the diagnosis could be incorrect.

No particular rigidity of thinking over and above a NT teenager who likes a wide range of pop music/tik tok etc. It appeared very much like the child was made to fit the diagnosis rather than the diagnosis fit the child.

So she declined the diagnosis and was later diagnosed with DLD. No one we knew had ever heard of that at the time but there is much more awareness in the last couple of years.

I'm totally convinced there are other children who have been misdiagnosed with ASD when in fact its DLD. Even the senco had not heard of it despite it being much more common than autism.

@Cuckoosheep my son too presents as severely disabled but is HFA not LFA as people assume. He is severely language disordered but despite that often being linked to LD both in the context of autism and as a stand alone diagnosis he has what in the end was described as “at least normal IQ” in reality he uses his superior IQ to overcome his language deficit to some extent but that’s nowhere near normal conversation and he certainly could barely communicate at all for years. His siblings are similarly intelligent without the autism and language deficit. People assume that if you have no LD you will be able to reach over your disability, and of course it does help. It’s not a cure and he certainly severely impacted by his disability. We were told to describe it as “significant” rather than profound.

@Familyofthem I found your story absolutely fascinating. Thank you for sharing it.

They don’t neatly divide. My son almost certainly has a single gene mutation, that arose in him & is not carried by the rest of the family (geneticist’s opinion). That causes autism (his first diagnosis and only diagnosis for many years), intellectual disability, language disorder in addition to what is typical for autism & epilepsy. But that is all caused by the impact of whatever the mutation is on his brain. It’s not separate boxes with separate causes.

I'm totally convinced there are other children who have been misdiagnosed with ASD when in fact its DLD. Even the senco had not heard of it despite it being much more common than autism.

Any autism team worth the paper it's written on knows all about DLD (called SLI until recently, maybe this caused senco's confusion?) It's always part of our hypothesis testing...along with DCD, ADHD/ADD, selective mutism, attachment and trauma, and GLD.

Autism assessment isn't foolproof however. The available tools aren't great for typical female presentation and imo the discussion part of ADOS level 3 is too hard conceptually for many very young fluent speakers, autistic or not. No doubt there are children who are very obviously autistic, and others where there is much more complexity unpicking what's what. This is why the NICE guidelines recommend multi agency teams to include clinicians, speech therapists, occupational therapists.

@Pira

I would definitely look into DLD as certainly sensory issues can be a feature.

One of the things that also made them believe that ASD was incorrect was the lack of rigidity of thinking as mentioned by earlier posters. She is incredibly imaginative and creative but terrribly unorganised. I suspect ADHD possibly on top of DLD which is often seen but the diagnosis of ASD was quite bizarre.

DLD fits like a glove in contrast. Given that its 7 times more common than ASD we must be failing some children.

It was never mentioned until a private SALT got on board. I agree that girls present very differently but she wasn't particularly young - 11 - so communication in terms of the actual assessment wasn't an issue.

After the NHS speech therapist confirmed DLD following further assessment, the senco arranged for training/awareness day for the staff and was honest in admitting they were not up to speed on it. Several other girls have since been disgnosed since.

I think there is a lot of work to be done with regard to girls and perhaps some unconscious bias towards ASD when it may not be ASD at all

Might be helpful to not use acronyms all the time?

DLD developmental language disorder

GLD general learning disability

SLI specific language impairment

DCD developmental coordination disorder (dyspraxia)

I often wonder if there is an element of ‘if all you have is a hammer....’ with diagnosis by autism specialists or autism-specific diagnostic pathways.

Psychiatric evidence is medical evidence ffs.

I agree with this. I know parents where we live who hsve children with PDA but our area won't recognise it. Some children have it listed as a trait but not as part of their diagnosis. There has been quite an issue about it locally with some parents being very vocal at forum meetings.

No it isn’t. 🤦‍♀️

@Itisbetter I do think that iq isn't the best way to measure intelligence especially with people with autism. I believe my son to be incredibly intelligent and that he understands much more that what he is given credit for. I think you put it really well in what you said about intelligence not making up for disability.

It's interesting even standardised language between professionals would be helpful.

@Shelefttheweb why isn't it?

@ProbablyRomanticised I was also told similar to @Willyoujustbequiet by the clinical psychologist who assessed my DS for ASD. She said that whilst DS didn't fit Criteria B 'Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history' he was able to be diagnosed because sensory differences have recently been added as part of the DSM-5 criteria.

Thank you for the information about DLD, I am going to look into it. I've always felt the ASD diagnosis wasn't quite right and really struggled to see how DS's ADHD and ASD could exist separately enough to be diagnosed and not 'one in the same'. He really doesn't fit in with anything I've read or been exposed to, I really struggle to identify similarities between my DS and other DC diagnosed with ASD. I know the saying, 'if you've met one autistic person, you've met one autistic person', but surely I would be able to resonate with other people's stories at least somewhat? My friends who have children with ASD also comment on DS's diagnosis, pointing out they don't see ASD at all, but ADHD...

There is no biological measurement, no physical symptoms.

There have been a lot of work looking for brain changes but no difference has been observed that is adequately predictive yet. In any case the diagnostic criteria focus purely on behavioural and communication differences, often via a history given by parents.

Lots of conditions have no physical or biological symptoms.

Yes - lots of mental health conditions