Debate on autistic spectrum disorders

We asked:- Do you believe enough is being done in your
area to support people with conditions on the autistic
spectrum?

Here are some of the comments we received:-

“We live in Cornwall and the provision for education is
abysmal. My son has a long journey each day to his school, which is
fabulous, but we had to fight the various civil servants to secure
a place there and indeed to even get his Special Educational Needs
correct.
 
As it isn’t in my catchment area, they said he couldn’t go,
yet the “special” school that is in my catchment is no better than
a facility for day care. Its Ofsted report was abysmal, saying the
buildings were unfit for purpose and they have no specialist
provision for children on the autistic spectrum.

Where would you send your child? A place that was patently
unsuitable or a place where you know he will get the one-to-one
attention he needs, continuing speech therapy, behaviour therapy –
the list is endless.

My son has transformed from a totally uncommunicative, withdrawn
isolated child who had no speech, to a child with phrases who can
communicate his needs in his own way. We still have the meltdowns
and tantrums etc but life is a bit less grim.

Cornwall needs to wake up and realise that provision needs to be
made available in all areas of the county, yes this involves money
but as a certain politician said: “Education, education,
education.” – hollow words indeed for parents such as
ourselves.

It also comes to something when our social worker has despaired
over the fact that nothing is provided for siblings. Until you have
walked a mile in our boots, you have no idea of the situations and
restrictions we face as a family unit. A club once a week for him
to go to where he could meet other children who are in the same
situation would be nice, or even a club where BOTH children could
go and be safe would be even better. But in the words of our local
social services office: “No one wants to commit to running such a
facility, they have no budget to finance it and nowhere they could
operate from.”  So we just have to struggle on.

Perhaps we should all take our children to the houses of
parliament for the day and leave them there with all these people
who don’t have to worry about catchment areas as they send their
children to private schools and promptly forget about them until
half-term and holidays when they come home and are foisted onto the
au pair or nanny. Let them see how we have to live and cope and
perhaps it would give them a bit of insight.”

Anonymous

“I do not feel that enough is being done to support adults
with Autistic Spectrum Disorders in my area. I have a diagnosis of
Asperger Syndrome but I was not diagnosed with the condition until
I was 35-years-old, which was very late in my opinion.
 
My mother had always been my carer as there was no other support
for me. I did eventually get a social worker, but I have to say
that the social worker is neither use nor ornament at times.
 
When you become 18, you are classed as a legal adult which means
that you can make your own decisions. It is a different kettle of
fish for people like me.  Although we become legal adults at 18, we
are not mature as Asperger Syndrome is a communication and
developmental disorder. 

We are not really capable of making our own decisions and
therefore our parents need to be the decision makers of our futures
as they know what is best for us. However, authorities won’t take
this into account and won’t listen to parents.  They just listen to
people like me and whatever decisions we make, even if the
decisions we make are wrong, the authorities go along with
us.
 
This is a serious matter.  People like me could end up in big
trouble if authorities won’t allow parents to be the decision
makers for us.
 
My mum died last year and I was left on my own with no support,
except a social worker.  I had to arrange my own support package. 
I found this stressful as I no longer had my mum to help me
communicate.
 
Also I have found it difficult to adjust to different people doing
the little things that I needed mum for. The transition was too big
for me.
 
People like me need to be diagnosed as early as possible.  When we
become legal adults, parents still need to be allowed to have a say
in our futures because we are not capable of managing our own
affairs.  We need to have support to enable us to leave home before
parents die so that when parents do die, we will have already
adjusted to our new lives.  We will then only have to adjust to not
having our parents there.
 
Authorities should not wait for a crisis to occur before they take
action.”
 
Debbie Hudson

“My son is on the autistic spectrum, as well as having a
multiple developmental disorder. I live in Telford in Shropshire
and apart from mental health services there is nothing to support
him.

He has a two-minute appointment twice a year to get his
medication and that is it. However, he is expected to “fit
in” with society and behave in an acceptable manner. 

Do we as parents have to become experts in behaviour
modification techniques?” 

Lisa Johnson

“I am a psychologist who specialises in autism and related
impairments and I am also an author on the subject.

Over the last few years the number of children presenting with
autistic spectrum disorders has rocketed and this is in line with
figures collated across the Western world.

The task for governments is gargantuan, and one would expect a
robust and urgent system of support put in place – yet the response
is the exact opposite.

The problems are brushed under the carpet, the condition morphed
and spun into nothing at all or into something else which can be
blamed on the family. Vast numbers of families I know with a child
with autism are punished over and over by the system which chooses
to remain ignorant about the problems, and invariably chooses
instead to blame the parents if the problems cannot be ignored.

The best case scenario is lip service paid to the problem by the
attendance at day seminars on autism for those professionals who
seek it out. 

This is a political strategy and is causing the most
extraordinary and increasing distress amongst families who are
already struggling with the raising of a child with autism. Funding
to support children with autism, from where I stand, is impossible
to obtain and this must also be a political strategy.

Last year I drew up a questionnaire on the effects on families
of trying to find support for their children with autistic spectrum
impairments. The findings were discussed at Portcullis House in the
presence of representatives from the departments of health and
education. I drew up a model which I termed the `Continuum of
Damage`. At the very least parents were spending years trying to
get support for the education of their children, attending numerous
tribunals, losing at least one job from within the family as they
fought the system. Eighty per cent were blamed. At the extreme end,
a mother threw herself off a bridge holding her autistic son.

I never thought I would see this profoundly cruel treatment of
children and families in our time and in our so called advanced
society with the Human Rights Act and the Disability Act enshrined
into our legislation, quite apart from the Children Act. The
Children Bill will compound this misery as none of the underlying
problems have been addressed.

We hear so much about the need to protect children, yet all I
see is the same rate of children seriously abused in our
communities over decades whilst vast numbers of children with
autism are left with nothing, or their condition made worse through
blame and bullying heaped on their families and specialists such as
myself.

What a damning indictment of our society.

Lisa Blakemore-Brown
Psychologist and Author
Brunel University

“I am 78 and worry who my son can contact when I die.  We
live in a terraced house in an inner-city student area. All local
neighbours are young students who come and go.  We have no
relatives or friends.  I have contacted all the usual agencies such
as government, social services, but there appears no one who can or
will offer to be a contact in such an emergency. 

I have just been kept going around in circles with my enquiries
and have found it exhausting.  My son will have his home so he will
not need accommodation.  However, he would be unable to make the
usual arrangements when I die, such as cremation.

He is unable to care for himself. He goes to pieces when his
routine is interrupted.   Those in authority seem to be frightened
and shy away from the problem, even when I just ask for a contact
telephone number for my son in case of emergency.  There must be
many, many families in the same situation.  When my son was a child
there was not only no help available, but also positive hindrance
as we were looked down upon as an uncontrollable, naughty child and
an inadequate mother.  Now he is an adult there is help for
autistic children, but seems to be none for the adults.

To make matters worse, recently my son was admitted to the
Critical Care Ward of the local hospital, University of Wales
Hospital in Cardiff, suffering from type one diabetes, dehydration,
an infection, raised cholesterol, high blood sugar, rapid loss of
weight which does not help matters.  I have been receiving tuition
from a diabetes nurse about insulin injection, blood testing and
about diet from the dietician. I am completely exhausted.  However,
I cannot fault the hospital for the wonderful care and treatment my
son has received and is receiving which is truly
amazing.”

Barbara MacArthur
Cardiff

“I am aware that various national projects are involved in
assisting people with autistic spectrum disorders to access work or
training. This is probably ‘patchy’ in terms of geography,
provision and quality, for example here in Norfolk our Asperger
Norfolk ‘Supported Employment Scheme’ offers a range of services
and support for post 16 year olds through to adults.

Projects are funded by Job Centre+ and Connexion Service.
Details are available via our website – www.asperger.org.uk”

Gordon Keable
Development Worker
 

“No.  Parents of children with autistic spectrum disorders
tell me there is a great shortage of short breaks support, and that
they have to “jump through hoops” to be offered a short break
carer. 
Not enough regard is given by service managers to parents’
thoughts and feelings regarding their need for support.  They
appear to concentrate too much on their own arbitrary guidelines
about children’s support needs, rather than allowing parents to
define their need for support.  

For instance, families who have a child ADHD and behavioural
problems are given much less priority than families whose child has
an obvious physical problem.   Short-breaks teams say they have a
shortage of carers.  More needs to be done to recruit carers, and
they should be paid more.”
 
Alison White
Community Field-worker
Scope

“How ironic that the government are looking outside for child
protection staff when the existing social care employees are
targeting families living with children who are autistic.

In our county, children are being removed from families and
bounced around the foster care system because the families they are
placed with have no idea of the complexities of caring for a child
living with autism. Parents are being accused of many things to
cover the fact that the social care employees are also ignorant of
how to deal with autistic spectrum disorders; indeed it has been
admitted to us in front of witnesses that this county cannot
provide suitably qualified and experienced services for the
specific type of autism we are living with.
 
This is rapidly creating national unrest as families are wrongly
targeted in order to whitewash what can only be termed abuse and
negligence by proxy.  I say this because families are being
neglected by failing for many years to provide services and then
abused by facing child protection proceedings brought about because
parents are unable to work with staff who have less insight into
the autism than the parents themselves.
 
So deep is the feeling of unrest that many have decided it must not
be left to continue and are taking steps to blow the whole debacle
wide open.”
 
Mrs Storey
Autistic Parent 
 

“You article was exactly right and I can speak as both a
professional and a parent of a child with an autistic
spectrum.
 
I work in a homeless hostel for women with/without children and we
have a woman at the project who has a diagnosis of being on the
autistic spectrum and she needs and wants to have supported
housing.

We are based in Bradford and there is nothing. The learning
difficulty team will not take responsibility due to her not having
a learning disability in their definition ie an IQ under 75 and no
other team will consider her. Subsequently we are now left
wondering where to turn.

The learning difficulty team accept that she is a ‘vulnerable
adult’ and under ‘fair access to care’ she has a right to a service
but NOT the service she needs. We are only temporary accommodation
so cannot have her staying here more than two years but she has now
been with us almost 15 months. The learning difficulty team are
willing to offer five hours a week to support her in a tenancy. But
without accepting any responsibility and admitting that she has any
needs. How frustrating is this?
 
There is a massive gap in the services, at what point will being on
the autistic spectrum be accepted? In Bradford, children with
Asperger’s do not come under the children with disabilities
and complex health needs team, I have been told that they come
under mainstream. This is fine if the mainstream services know how
to cope and manage children with Asperger’s.
 
When will this end and how long will it take for social services to
stop discriminating against this disability?”
 
Cath Dickinson
Housing support worker and mother of a child with Asperger’s
Syndrome

“My daughter was diagnosed with Asperger’s three years ago.
She is in year eight at school and has had very little support to
enable her to achieve academically. I am currently struggling to
have her statemented, but have been turned down and now have to go
to appeal.

She experiences high levels of anxiety and this is exacerbated
at the moment due to the difficulties she has in organisational
skills, which on Tuesday, led her English teacher to state that she
could slap her! My daughter now does not wish to return to the
class – unsurprisingly – and had a panic attack at school
this morning due to her elevated stress levels.

I am so angry and frustrated at this blatant intimidation of a
vulnerable, immature and confused child. I am a mental health
professional working with clients who display extremely difficult
and challenging behaviours but I would not tolerate comments like
this made by my staff to their colleagues, about a client, in front
of the client and the other clients present.”

Paula Malone

“As a parent of a child with semantic pragmatic difficulties,
I have found that the NHS provision is poor.  There are few speech
and language therapists and waiting lists are long. Other services
seem just as bad although I do realise that funding is an issue for
services.
 
My eight year old child has been a statistic for four years now and
is treated more like a number than a human being.”
 
Anonymous

“No, I certainly don’t think enough is being done for
children on the Autistic Spectrum Disorder. As with most health
service provision, services are different depending on your
postcode. You get what you get because of where you live.  Parents
are going through a lot of stress to get the provision for their
children. Some have incurred huge debts or re-mortgages to fund for
the provision which is denied them by their Local Education
Authorities.

Our son was diagnosed with autism in June 2003.  We started
going through the rigmarole of finding out what to do (because no
one tells you and we just got a
small National Autistic Society leaflet) without any assistance at
all. 

The LEA agreed to assess him but decided not to give him a
statement regardless of the diagnosis. Eventually, we went to the
SENDIST tribunal in January 2004.  We spent money to hire a lawyer
because we felt it was very important to win the case so our son
could get the provision he needed.  We won and the LEA were given
five weeks to write a statement.

The panel couldn’t understand why he wasn’t statemented already
as he totally fits the criteria as per the Special Educational
Needs Code of practice. Five weeks to the day, we received the
statement in the post. We had requested them to consider ABA
(Applied Behaviour Analyses) therapy as this treatment works in 80%
of diagnosed children and most of them are eventually able to live
independent lives, which would save local councils thousands of
pounds from their social care budgets. 

The LEA refused. We still had an option to go to the tribunal,
but due to lack of funds we decided not to.  We would still like
our son to be provided with ABA therapy and, though he is
improving, we know he would improve a lot more if this
therapy
was provided.  We are confident it would eventually help him to led
a more ‘normal’ life and we feel he is not getting the chance to
improve his future life.

He is almost five years old and is improving slowly but he still
has a long way to go.  It is recommended to commence ABA before the
child is seven-years-old, but all we can do is pray for some
miracle to happen so he either gets the ABA provision he needs or a
change in diagnosis. 

He has just started in the spring term to get the statemented
provision (since the diagnosis in June). It is really appalling
that we pay taxes and we get such treatment when we need
something.  There’s got to be a better way of improving provision
and ensuring ASD children are provided for. They can’t even get
assessed by an occupational therapist in our region.

I understand there are councils in the country where they are
sympathetic and you don’t have to fight so hard to get the
provision. I wonder what hope these children have in the future
when they grow to be a responsibility of the local authorities who
don’t care for them?”

Margaret Omole

“As the chief executive of a service that provides
residential and day services for adults with ASD my response is a
resounding “NO”.
 
There is little understanding of the very special support that
individuals with this condition require. We are the only specialist
service in Norfolk and are continuously frustrated by the growing
demand locally that is clearly not being met.
 
This situation is exacerbated by the fact that funders are
extremely reluctant to pay for the specialist and intensive support
that we provide.  This means that instead of developing services
and supporting more people we are constantly “chasing our tails”
and fighting for core funding.”
 
Lynda Kett
Norfolk Autistic Community Housing Association

“I read your article with great interest as I have a
19-year-old son who is ‘stuck in the middle’.    I have finally
managed to get a diagnosis for him with recommendations of
medication (Ritalin) that may help him. However, because he is
‘stuck in between’ mental health services and learning disability
services, he is unable to have the medication prescribed.  It has
been prescribed by a consultant and no one is willing to take
responsibility for this.

He has been diagnosed as having D.A.M.P. – Deficits in
Attention, Motor Control and Perceptual Abilities.  It is an
accepted term in Scandinavian countries and in Australia. It has
been around since the 1980’s.  I finally got a diagnosis through
instruction of the court due to the criminal activities on my son. 
He is in a world of his own, he is able to communicate with people
but his understanding of the world is very different to ours. 

He has a combination of difficulties that encompass many of the
traits of Attention Deficit Hyperactivity Disorder and autism. He
is trying to live independently and has his own flat but he is
unable to manage his money and is in a great deal of debt.  He is
not working and is presently on sickness benefit due to
depression.

As a social worker working in the field of learning
difficulties, I have found it very frustrating not to be able to
access services for my son.  I know that working for social
services gives me an advantage and I often wonder how people who
know nothing of the system get on.

It is about time authorities recognised that there is a need for
support services for people like my son.  A little bit of help and
support early on can often mean they are able to live a relatively
‘normal’ life.”
 

Rachel

“Last year on May 14th, a National Manifesto for Autism
was launched by the All Party Parliamentary Group for Autism. Not
many people are aware of that, especially the people who should be
aware and who could ‘make a difference’.

Although the manifesto was introduced as a document that MPs
would hopefully sign up to and support, with the aim that it was
then used to lobby parliament, parents, carers and autism
organisations were also asked to sign in support. The one, and
probably most important group of people, who have never been asked
to support the manifesto, is local government, who spearhead our
service provision.

This simply does not make sense, as the manifesto is a document
which has been written with the emphasis on joined-up thinking and
working practices between all major service providers and agencies.
Yet, here we have a vital link in the chain who are blissfully
unaware of its existence.
 
Autism-in-Mind, a parent-led national organisation, is aware that
services across the UK differ considerably. Parents often move into
another area to be able to access better service provision. 
Autism-in-Mind is also aware that many local governments have
formed Strategic Partnership Group, who currently looking at
service provision in their areas, and how to improve services.

Those areas who do not have Strategic Partnership Groups will
also be required to form partnerships looking at service provision
as a direct result of the Children’s Green Paper ‘Every Child
Matters’ If services are being redesigned and rebuilt around the UK
then surely it would be good practice for our local governments to
be aware that we do have a National Manifesto for Autism?

Many are looking for guidance and a way forward. There is a
clear way forward written to a 10-year timescale, but sadly far too
many people are being left in the dark about its existence.
 
We have been told that it is not the job of the All Party
Parliamentary Group for Autism to disseminate this document through
the ranks, although we are reminded in every e-mail that MP’s need
to sign in support of the document. If it is not the job of the
APPGA, then it is still a job that needs to be done and
urgently.
 
People who live with autism on a daily basis deserve better than to
be sat waiting for another merry-go- round to finish its spin.
Let’s not spend the next year arguing about whose job it is to make
our decision makers and planners aware of the manifesto, let’s just
make sure that we do it.”
 
Carole Rutherford Co-Founder of Autism-in-Mind
Parent of two sons with autism

“No, not enough is being done in South Gloucestershire. There
is no provision in the county for Autistic Spectrum Disorder
children in education (except inclusion). The Local Education
Authority will argue diagnosis if it is not by there own
Communication Disorder Team.

Our son was diagnosed ADS in January last year by his child and
adolescent psychiatrist, in direct contrast to the Communication
Disorder Team’s findings (in five areas my son more than met
criteria, but in the sixth area he was borderline ‘so his is not
autistic’).

Our battle still goes on. After four Special Educational Needs
tribunals, the Local Education Authority still will not accept
diagnosis, despite the tribunal panel and LEA being told directly
from the psychiatrist. All specialists, apart from the Local
education Authority Education psychiatrist, say he must be in a
small class specialist school.”

Russell Marchant

“I am a member of the National Autistic Society Dover and
Deal Branch and this year’s branch officer and chair.

We feel as parents of children with Autistic Spectrum Disorder
that primary school aged children are often not taught by trained
members of staff. In my son’s case in years one to three, the
teacher went on a course half-way through the school year.
 
Advice on strategies was given in year one that was totally ignored
despite the advice echoing those on his statement. I feel there
should be a support service to advise and check on how the
strategies are going.

The NAS runs befriending schemes, but as with all voluntary
agencies, the money isn’t there to cover all areas. Kent does not
have a befriending scheme and there is a very real need for this,
particularly by the teenage plus years.

The NAS will train and pay the expenses of the befriender, but
can not afford to pay a co-ordinator to run the scheme. Play
schemes in the holidays appear to be sport orientated which is
often not suitable for those with an ASD. In short, the majority of
people with an ASD need support tailored to their needs.

Suzanne Green
Mother of a child with an ASD
 

“My daughter is 16 and soon to leave school. The
overwhelming feeling I have is of relief that at least the school
years are over. They have had to be survived and endured by both
her and the family. I shouldn’t have had to wish her school years
away.
I have to watch other “normal” children almost taking their
education for granted, while my daughter has lived through a total
educational vacuum.

There is nowhere for most youngsters with Asperger’s syndrome to be
educated. Mainstream is too much for them to cope with, and the
only alternative for my daughter was an MLD (Moderate Learning
Difficulties) school. This is a wonderful school if your child is
MLD, but for a bright child with AS, this provision is
inappropriate.

She is bright, hard working, motivated, and talented at art and a
whizz at computers. But she has not been able to access an
education to her level with support and understanding for her
difficulties in one setting. Her school is a good school, but can
only teach her the basics. She should have been able to access
GCSEs. She should have been able to go on to sixth form locally,
and do A’s – maybe one at a time, as she gets stressed out when she
has to cope with too many things to a deadline.

The LEA is indifferent, and of course pushing towards further
“inclusion” because it suits their budget. Inclusion is often
justified with “it will teach them social skills, and they will
learn normal models of behaviour” – no it won’t, they have to be
taught these things literally. Those things are the very things
which cause Asperger’s kids the most problems.

Those with Asperger’s need special units like language units,
attached to mainstream schools. Pushing children with
Asperger’s syndrome into mainstream schools without support
and understanding amounts to, in my opinion, child cruelty.
Some books say that, “with the right support children with the
syndrome can achieve …” — but there never is the right support,
and there never will be in mainstream.

I hear the same painful stories from other parents of children with
Asperger’s – over and over again. How much longer is this
group of children – who are already at a gross disadvantage – to be
neglected? There is still widespread ignorance in schools about
Asperger’s syndrome.”
 
Pat
 
 
“There is not enough support. The only benefit is a free bus
pass for our son. The main problem is education and when your child
is unable to access it, the family is left having to care 24 hours
a day, teach and purchase educational materials, all without a job
or having to work from home and fitting in with care
responsibilities. There is no assessment of family needs by social
services and a general lack of understanding of ASD (Autism
Spectrum Disorders) from those you do come in contact with at town
hall. 

Health services are in short supply and lack specialist knowledge,
for example we couldn’t get on waiting list for occupational
therapy to begin with, now we are on it we have been waiting more
than two years. There do not appear to be specialist mental health
services geared towards autism (or indeed ME, another condition our
son has).  ASD adolescents are poorly served by leisure services
too as there is a lack of recognition what it means to have a
communication disorder and how this affects levels of independence.
Also, after school activities aren’t accessible because of lack of
support.

All in all, life is very stressful for the ASD person and his or
her family – as a society we have a long way to go.”
 
R Lever

“As a parent, I feel that there should be more
opportunities for children with autism. There should be more social
clubs, more social activities for them. As social communication is
a core deficit in autism, there is an urgent need for more projects
to aid integration. Teenagers and young adults with autism should
have an equal chance.”

Nevin

“One issue which concerns me is that many young people with
autistic spectrum disorders can perform well in IQ tests and
therefore may not qualify for services once they pass the age of
18, if there is an IQ bar to services for adults with learning
disability. Meanwhile there are no other services for vulnerable
adults unless they have a mental illness or physical disability.
Some of these young people are very vulnerable, and likely to need
considerable support and supervision in the long term, but are left
high and dry.  I’d be interested in hearing about any service which
bridges this gap.”

Emily Engel.

“I think the label of Autism has become to “fashionable” and
it is now over diagnosed,