We read Gillian Baird’s piece about autism with great interest. We
are the parents of a little girl who, at almost 3 years of age, has
recently been diagnosed as severely autistic with severe general learning
difficulties. Our daughter started a home-based applied behavioural
analysis programme two months ago that we are currently struggling to
finance ourselves (we are in the throes of negotiations with our LEA in an
attempt to secure funding).
She is a little girl for whom the combination of autism and learning
difficulties makes the world a very confusing and strange place (we are
strange, not her…) and she finds it very difficult to make any sense of
language, play, social interaction or life in general. Children with my
daughter’s difficulties flounder in mainstream pre-school settings. In a
nursery setting my daughter simply examines the outside edges of the room,
leaving chaos in her wake as she picks up parts of toys in a random
fashion, pulls posters off the wall whilst all the time a secret smile
(not used for social interaction) on her face.
The reality of being the parents of a child with our daughter’s
difficulties is both terrifying and life-affirming. We have been
incredibly lucky that our local paediatrician, specialist health visitor,
specialist nursery nurses and speech therapist have been absolutely
fantastic and utterly understanding.
But the road to diagnosis has not been easy. Looking back, we now see
many deviances in our daughter’s development- her birth was traumatic (she
turned back to spine during the labour, was delivered by ventouse and the
second stage was elongated). She was a placid, eerily ‘good’ baby who
would ‘go to anybody’ and didn’t show any particular attachment to her
parents, she didn’t point, she didn’t turn to her name until very
recently. She had an incredible early social smile which, we now realise,
she would use too intensely (she would fix people on the bus with her
smile and not shift her gaze until they looked at her). She would also
approach her peers very intensely, in an ‘over-affectionate’ way. She has
never drawn our interest to anything. For many months we did not know what
was wrong. She has become more obviously autistic (as opposed to learning
disabled only) and many ‘behaviours’ have developed including hand
flapping, grimacing and endless self-stimulatory behaviour.
The contrast has become astoundingly apparent since the birth of her
younger brother (now 10 months). We are astounded by how much he
understands and his thirst for social interaction of all kinds- he points,
shows us toys, waves, claps and attacks cause and effect toys with relish.
Our daughter, luckily enough, is fascinated by him.
Of course, we want answers. We know it isn’t the MMR vaccination as
our daughter had the triple jab at 18 months when her autism was already
very apparent. We recently saw a geneticist at Guys Hospital who has
tested Olivia for the Retts gene (we were told a very small proportion of
autistic girls have the gene and we have been worried about ‘strange’ hand
movements although her gross motor skills are her strongest point). A
sleep EEG shows abnormal spikes but within the ‘autistic’ range (but she
may be having absences). We are awaiting an MRI scan.
Meanwhile, life goes on. Our daughter does 7 hours of ABA therapy a
day and slowly, very slowly, she is learning the meaning of communication.
She has learnt two Makaton signs (to request biscuit and book although she
tends to used a merge sign for ‘I want’) and is responding well to PECS
pictures. She has started to develop very early play skills (container
play and stacking skills). We do a ‘special time’ with her (non-directive
therapy) and her brother every evening after tea with a bag of highly
motivating toys and she loves it. She has almost got the hang of
peekaboo and when those bright blue eyes fix yours in an eye gaze with
communicative intent it literally blows you away.
We feel we are doing everything we can and that is all you can do. We
feel, very strongly, that a widespread knowledge of diagnostic tools such
as CHAT will be of great benefit. We took our daughter to see a very
eminent paediatrician aged 18 months who told us categorically she wasn’t
autistic. How could that be? She was already demonstrating specific
autistic traits such as a total lack of the use of gesture, not turning to
her name and appearing deaf (despite the insertion of grommets for glue
ear and an assurance her hearing was perfect), very repetitive, tapping
movements and manipulation of objects in the environment. We feel that her
gender and her affectionate and passive nature put the paediatrician off
the ‘autistic’ scent.
The future has to lie in early intervention. We have a child at the
very ‘severest’ (how we hate that word) end of the autistic spectrum who
has proved unreachable to even the most talented of professionals. Yet,
applied behavioural analysis is working and it should (and must) be
available to children like our daughter in the future, regardless of their
parents financial situation. Every day, every week, every month an
autistic child is left to flounder is too long. We have no illusions. Our
daughter will not be going to mainstream school. She will probably be with
us for the rest of her life but she will maximise her potential. And she
will maximise her quality of life.
Rapid Response:
Parenting a severely autistic child
We read Gillian Baird’s piece about autism with great interest. We
are the parents of a little girl who, at almost 3 years of age, has
recently been diagnosed as severely autistic with severe general learning
difficulties. Our daughter started a home-based applied behavioural
analysis programme two months ago that we are currently struggling to
finance ourselves (we are in the throes of negotiations with our LEA in an
attempt to secure funding).
She is a little girl for whom the combination of autism and learning
difficulties makes the world a very confusing and strange place (we are
strange, not her…) and she finds it very difficult to make any sense of
language, play, social interaction or life in general. Children with my
daughter’s difficulties flounder in mainstream pre-school settings. In a
nursery setting my daughter simply examines the outside edges of the room,
leaving chaos in her wake as she picks up parts of toys in a random
fashion, pulls posters off the wall whilst all the time a secret smile
(not used for social interaction) on her face.
The reality of being the parents of a child with our daughter’s
difficulties is both terrifying and life-affirming. We have been
incredibly lucky that our local paediatrician, specialist health visitor,
specialist nursery nurses and speech therapist have been absolutely
fantastic and utterly understanding.
But the road to diagnosis has not been easy. Looking back, we now see
many deviances in our daughter’s development- her birth was traumatic (she
turned back to spine during the labour, was delivered by ventouse and the
second stage was elongated). She was a placid, eerily ‘good’ baby who
would ‘go to anybody’ and didn’t show any particular attachment to her
parents, she didn’t point, she didn’t turn to her name until very
recently. She had an incredible early social smile which, we now realise,
she would use too intensely (she would fix people on the bus with her
smile and not shift her gaze until they looked at her). She would also
approach her peers very intensely, in an ‘over-affectionate’ way. She has
never drawn our interest to anything. For many months we did not know what
was wrong. She has become more obviously autistic (as opposed to learning
disabled only) and many ‘behaviours’ have developed including hand
flapping, grimacing and endless self-stimulatory behaviour.
The contrast has become astoundingly apparent since the birth of her
younger brother (now 10 months). We are astounded by how much he
understands and his thirst for social interaction of all kinds- he points,
shows us toys, waves, claps and attacks cause and effect toys with relish.
Our daughter, luckily enough, is fascinated by him.
Of course, we want answers. We know it isn’t the MMR vaccination as
our daughter had the triple jab at 18 months when her autism was already
very apparent. We recently saw a geneticist at Guys Hospital who has
tested Olivia for the Retts gene (we were told a very small proportion of
autistic girls have the gene and we have been worried about ‘strange’ hand
movements although her gross motor skills are her strongest point). A
sleep EEG shows abnormal spikes but within the ‘autistic’ range (but she
may be having absences). We are awaiting an MRI scan.
Meanwhile, life goes on. Our daughter does 7 hours of ABA therapy a
day and slowly, very slowly, she is learning the meaning of communication.
She has learnt two Makaton signs (to request biscuit and book although she
tends to used a merge sign for ‘I want’) and is responding well to PECS
pictures. She has started to develop very early play skills (container
play and stacking skills). We do a ‘special time’ with her (non-directive
therapy) and her brother every evening after tea with a bag of highly
motivating toys and she loves it. She has almost got the hang of
peekaboo and when those bright blue eyes fix yours in an eye gaze with
communicative intent it literally blows you away.
We feel we are doing everything we can and that is all you can do. We
feel, very strongly, that a widespread knowledge of diagnostic tools such
as CHAT will be of great benefit. We took our daughter to see a very
eminent paediatrician aged 18 months who told us categorically she wasn’t
autistic. How could that be? She was already demonstrating specific
autistic traits such as a total lack of the use of gesture, not turning to
her name and appearing deaf (despite the insertion of grommets for glue
ear and an assurance her hearing was perfect), very repetitive, tapping
movements and manipulation of objects in the environment. We feel that her
gender and her affectionate and passive nature put the paediatrician off
the ‘autistic’ scent.
The future has to lie in early intervention. We have a child at the
very ‘severest’ (how we hate that word) end of the autistic spectrum who
has proved unreachable to even the most talented of professionals. Yet,
applied behavioural analysis is working and it should (and must) be
available to children like our daughter in the future, regardless of their
parents financial situation. Every day, every week, every month an
autistic child is left to flounder is too long. We have no illusions. Our
daughter will not be going to mainstream school. She will probably be with
us for the rest of her life but she will maximise her potential. And she
will maximise her quality of life.
Kind regards
Amanda and Neil Mortensen
Competing interests:
None declared
Competing interests: No competing interests