A couple of weeks ago I took Monty, aged 18 with ASD, for his Covid booster injection. Since I was accompanying an adult and filling in his paperwork, I thought I should explain why I was needed there. I just said he has autism and prefers to speak English.
Where we
live, autism still means severe autism and I for one would be very wary about
trying to stick a needle in an unknown person with that diagnosis.
Monty is
no problem at all at the doctor or dentist, he has figured all this out.
Moves are
afoot to reintroduce the term “profound autism” to describe older children and
adults who are severely disabled.
Awareness of autism has grown monumentally over the past 20 years. Yet, this increased awareness has not been accompanied by improvements in services to support autistic individuals and their families. Many fundamental questions remain about the care of people with autism—including which interventions are effective, for whom, when, and at what intensity. The Lancet Commission on the future of care and clinical research in autism aims to answer the question of what can be done in the next 5 years to address the current needs of autistic individuals and families worldwide.
Available to watch on-demand / webinar
The term profound
autism is not appropriate for young children. It might begin to be useful, with
the consent and participation of families, from early school age (e.g., from
the age of 8 years) for children with autism and severe to profound
intellectual disability or minimal language, given the evidence that these
factors are not likely to change. The term might be most helpful in adolescence and adulthood.
It is not intended to describe other severe difficulties related to autism that
might apply to individuals with extraordinary life circumstances, trauma,
family conflict, scarcity of resources, or those with co-occurring mental
health problems. We acknowledge that the word profound can have different
connotations and other terms might be more appropriate in other languages. For
example, in Spanish, the
words severo or grave might be more appropriate because of different meanings
of profundo (ie, deep).
Figure 4 shows the potential effect of differing levels of
service, formal recognition of autism, active support, and community adaptation
on the outcomes and functioning of the heterogeneous population of autistic
individuals.
Societal response and services can optimise outcomes for all
people with autism The green line indicates the hypothetical degree to which
the environment supports the adaptive potential of autistic people with
different cognitive abilities.
Many of those who were behind the drive to create the idea of the autism spectrum now acknowledge that the term autism is so broadly applied that it has little meaning. It looks like they want to go back to the ways things used to be when different diagnoses were used, based on how disabled the person is.
When
Kanner and Asperger were studying children in the 1930s, they were mainly
interested in those without intellectual disability.
From his
landmark paper in 1943, Kanner’s subject #1, later identified as Donald Triplet,
grew up, went to College, learned to drive and was a keen golfer.
Today,
when people talk of Kanner’s autism or classic autism, they are referring to
something very different to much of what Kanner was studying. They are talking about people with no hope of
graduating real high school, let alone driving a car.
Kanner’s
autism was not originally profound autism, but nowadays it is.
Can you have severe autism and normal IQ?
I would
have been one of those saying it is impossible to have severe autism and a normal
IQ, but I fully admit that it depends on whose definition you are using.
A retired neurodevelopmental
pediatrician called James Coplan has some interesting thoughts.
Coplan wrote a short paper called “Counselling Parents
Regarding Prognosis in Autistic Spectrum Disorder”. https://pubmed.ncbi.nlm.nih.gov/10799629/
It is only
three pages long. In one of his videos
on his YouTube channel he comments that autism is 130 years behind most areas
of medical science, since it is not diagnosed biologically, merely based on
observations relative to an ever-moving benchmark, the US DSM (Diagnostic and
Statistical Manual of Mental Disorders).
He points
out that back in the 1980s under DSM version 3, the only kind of autism was
severe autism with MR/ID. So only a few people were diagnosed. In 1994 version 4 appeared and it included
milder autism, with Asperger’s as a sub-type. In 2013 in DSM version 5,
Asperger’s disappeared as a sub-type.
Coplan went
from working with a rare, but severe disorder to a common but generally much
mild one.
Coplan
considers three variables:
·
Atypicality (how autistic you are) occurring along a
spectrum from mild to severe.
·
Intelligence, with the centre point being an IQ of 70, the
boundary of MR/ID
·
Age
Autism
of any degree of severity can occur with any degree of general intelligence.
The long-term prognosis represents the joint impact of autism severity and cognitive ability; higher IQ leads to better outcome.
The observed severity of autism in the same individual varies with age. Many children with higher IQ do experience significant improvement over time.
The ideal outcome is child B, in the chart, whose atypical symptoms were always mild and whose intelligence is above cut-off for mental retardation / intellectual disability (MR/ID). The core features of ASD break up into fragments, which diminish in severity with the passage of time, until only traces of autism remain.
A
less favourable outcome is child A, who has severe autism, plus mental
retardation MR/ID. As time goes by,
he continues to exhibit the same level of autism.
Clearly most children will be somewhere in between child A and child B.
Dr
Coplan says that there is little evidence that the prognosis today is different
to that in the 1970s or 80s. That suggests little impact from the twenty year
surge in expensive ABA interventions in the US.
Childhood Schizophrenia
The
original term for what became autism, was childhood schizophrenia, which
started being used in the 1920s.
I did mention in an earlier post that I came
across an interesting comment written by
Michael Baron; back in 1962 he headed the world’s first parent organisation for
autism, the UK's National Autistic Society.
Baron’s main point was to highlight how autism has completed morphed in 60
years to a quite different condition. It is not the same autism.
When his organisation was originally founded, it was called The Society for Psychotic Children. That was the name the parents came up with themselves, before later substituting the word Autistic.
The old name has well and truly been erased from the records. Definitely not politically correct these days.
Autism may now be a cool diagnosis to some people in 2021, but being psychotic still is not. Perhaps bipolar will be the next cool diagnosis.
Note that the only approved drugs for autism in 2021 are actually antipsychotic
drugs!
Autism first appeared as an official diagnosis in 1980
In 1980 the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) includes criteria for a diagnosis of infantile autism for the first time.
In 1994
Asperger’s Disorder was added in DSM-IV as a separate disorder from autism.
In 2013 DSM-5 was published and it combined autism, Asperger’s, and childhood disintegrative disorder into autism spectrum disorder (ASD).
Hopefully, in DSM-6 there will be more
intelligent science-based subdivisions of conditions within autism spectrum disorder (ASD); but,
probably not!
Autism without impaired speech or cognition
In
2006, before the introduction of Asperger’s as a diagnosis, Ari Ne'eman
established the Autistic
Self Advocacy Network (ASAN).
These people
are a subset of Dr James Coplan’s high intelligence plus mild to severe
atypicality.
Many of
this group regard intellectual impairment and lack of speech as unrelated to
autism. They see them as just unrelated comorbidities.
The
Moms with a case of profound autism at home might counter that the suicidal
thoughts that plague the #actuallyautistic people are also not part of autism either,
rather a comorbidity.
Who is right?
I
suppose the science can tell us who is right.
But
language is not about science and being right does not really matter.
The
meaning of words can change. The words “gay”
and “queer” are no longer usable in their original meanings.
In the
school yard, “autistic” is now used as an insult, like all the LGBT words
are/were, depending on where you live.
Profound Autism
Now let
us come back to the proposed definition of profound autism:
·
IQ<50
·
Age>8
·
Severe autism/atypicality
This
fits perfectly into Dr Coplan’s framework.
It is
the stubborn “block A”.
Far
removed from the Elon Musk “block B” type, that was treated in childhood by explaining
social cues etc and the result was the symptoms receded into the background;
they are only there if you want to see them.
It
looks like some people are desperate for those little cubes not to melt
away; they actually find they give them identity and purpose. Musk just wants to make a lot of money and
get to Mars, which looks a better life mission.
You might wonder why you have to wait to the age of 8 for this proposed new diagnosis. The panel includes Catherine Lord, who conducts the ongoing longitudinal study of autism running now for 20 years. She fully understands that things can change along the way as toddlers grow up.
· Some
people are misdiagnosed with autism at a very early age. Indeed the well known autism epidemiologist Eric Fombonne found that when you recheck the diagnosis, about a third of people have been misdiagnosed. Doctors over-diagnose to help delayed children access the better services, available to those with an autism diagnosis.
· Some
toddlers are just late bloomers and after a period of delayed development, do
catch up
·
Some
people unfortunately have an event in childhood, usually after the age of 5,
that causes a (further) regression. This
is what I term “double tap” autism; you survive the first tap, but then along
comes the second. The second event can lead to profound disability.
Conclusion
You can certainly make the case that the old DSM-IV terminology was much more useful. People with normal IQ and no speech delay were Aspies and people with low IQ and limited speech had autism.
Many parents do not like now having to
say their grown-up child has severe autism, for them autism was sufficient.
They see severe as an unnecessary pejorative term.
Once self-advocates tell the world
that autism is neither a disorder, nor a disability, it is hard for the wider
public not to conclude that autism is nothing more than the new ADHD. You pay some money, get the diagnosis you
want and join the club.
As
Uta Frith, who brought us the well-intentioned idea of autism as a spectrum recently
commented, the word autism is now meaningless.
I think one of the underlying problems is that most people do not like any terminology that refers to low IQ. Don’t dare mention mental retardation. The English language is full of pejorative terms for people with low IQ. Eventually, as their child becomes an adult, some parents start to use the term intellectual disability as a descriptor to distinguish their case from Elon, Greta, Temple Grandin and those cute Netflix depictions.
As Catherine Lord and others have
shown from their longitudinal studies, IQ is the best predictor of a better outcomes
in adulthood.
There is much in this blog about
raising cognitive function and as I have been saying for a while, treating
ID/MR is much less controversial than treating autism.