92
rett syndrome
other children and she spends
Now that it is clear that Rett syndrome
much of the time playing repetitively
is a biologically caused condition in its
in the sandpit. Megan has Down
own right, it no longer makes sense to
syndrome and autism.
have it as a type of autism. However, like many other conditions, it can be a
Classifying Rett syndrome
cause of autism.
It is clear that Rett syndrome is a biologically caused condition in its own right
When Rett syndrome was first described,
We now know that once girls are
people did not understand what caused
out of the regression phase, their
it. They observed girls in their regression
social interest and interaction can be
Helen Leonard in Australia and our own
phase when they were often at their
amongst their strongest skills, even
team in the UK, have observed that we
most cut off and withdrawn. They saw
though their ability to communicate
more frequently see this autistic picture
that, like many autistic children, they had
may be very limited. We also know that
in the mobile girls than in those who are
some language and then lost it. They
the hand stereotypies in Rett syndrome
non-walkers.
also noted that they had stereotyped
are neurologically driven rather than
For these girls, a diagnosis of autism
hand movements. It is not difficult so
being something they choose to do; in
and Rett syndrome will be useful
see why they would have decided that
fact, sometimes the stereotypies can
because it may dictate a different
this was a form of autism. However,
interfere with them doing the things
educational approach from those who
even in making this diagnosis, they
they want to do. So for many girls with
do not have autism.
could see that girls with Rett syndrome
Rett syndrome, it is not accurate to
were different from the majority of other
describe them as autistic, and may be
Conclusion
autistic children, so they put them in
counter-productive.
I think it is a good thing that Rett
their own little subgroup:
syndrome is coming out of the autism
Rett syndrome and autism
spectrum. It allows us to make a much
DSM-IV: Pervasive Developmental
As we have seen, someone with Rett
more individualised assessment in each
Disorders (Autism Spectrum)
syndrome can also have autism. Some
girl as to whether she has Rett syndrome
299.00 Autistic disorder
girls with Rett syndrome will be less
and autism or just Rett syndrome, and
299.80 Pervasive developmental
socially engaged, more motivated by
to plan accordingly. If she does have
disorder, not otherwise specified
toys than by people, and have other
autism, she should still be able to access
299.80 Asperger’s syndrome
repetitive behaviours which are distinct
relevant educational approaches.
299.80 Rett’s disorder
from their hand wringing. Anecdotally,
299.10 Childhood disintegrative disorder
many clinicians in the field, such as
Further information
Hilary Cass is Paediatric Neurodisability Consultant at Evelina Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust: www.guysandstthomas.nhs.uk For more information about Rett syndrome, visit: www.rettuk.org
Although a girl may have both autism and Rett syndrome, the two conditions are distinct.
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