One family’s fight

Can you imagine having to move 1,000 miles to the most northerly
part of the UK just so your children can enjoy the highs and lows
of growing up together? Choosing to uproot one son from a place in
a school where he is thriving and for which you had to fight for
two years, to give his brother some chance of living at home? Could
you become an expert in child welfare legislation while holding
down a busy job and meeting the emotionally and physically draining
needs of two autistic children with disturbed sleeping patterns?

Chris (13) and Jacob (seven) are both able children in their own
ways. Although without speech, Chris can understand everything said
to him, and an offshoot of his need to control where everything in
the house is positioned means I never have to plump up the cushions
before visitors arrive. He is a large child and has to be managed
carefully to avoid triggering violent outbursts. He will go into
very few shops and so, if we did not have respite, the rest of the
family would be unable to do basic things like buying new
shoes.

Jacob has no concept of danger. He’s a manic scientist who mixes
any chemicals he can get his hands on, so the house is a fortress.
He is also a fragile child who needs a lot of reassurance,
reinforcement and support. Both children need constant one-to-one
care and supervision as they move from home to school to
recreation.

We have moved several times to different areas of the country,
sometimes for work reasons and other times because provision for
the boys has been unacceptably bad. We have lived in Bedfordshire,
where Chris was born; then Cheshire, where we got a high level of
support. We moved to Northampton when Chris was nine, but were
still on the waiting list for respite when we left after two years.
In Essex we had just 12 hours respite despite three years of
assessments, and we could not afford a home close enough to the
specialist day school that Chris needed. And so we moved to
Shetland just over a year ago, where we live in an isolated croft,
but where the provision works and we can do more as a family
together.

The differences between local authorities have been staggering.
Environment can trigger behaviours in autistic children, so not all
care facilities are appropriate. But children are often expected to
meet the provision available, not the other way around. Even when
an appropriate school place for Chris or Jacob was found, we spent
years arguing about a few miles transport to and from the school.
With two “severe” boys in one family, we exceeded our “unit cost”,
which meant that boarding Chris hundreds of miles away was an
attractive option for social services – but not for him or for us.

We have also struggled for years to get appropriate respite care.
If my sons were in two different families we would not have had
problems in seeking the occasional break from caring. Respite would
have given Chloe, the boys’ unaffected sister, the chance to do
things most children take for granted like go on a funfair ride,
visit the cinema or eat somewhere other than McDonald’s. Jacob does
not have the rigid obsessions of Chris and deserves a chance to
socialise too. Yet even when respite services are available, they
never come quickly. The respite route is subject to constant
disruptions and delays – lack of suitable facilities nearby, and a
lack of carers coming forward to offer respite from their home.
These delays and the spacing out of assessments make it hard ever
to plan ahead.

Given that autism is a condition present from birth, why is money
wasted assigning professionals to assess medical needs, benefits,
care and education, only to do it all over again every time a
family moves? Why do social services and education never properly
share information before families move? Why are services so
different in each area? Our experience suggests that there should
be a specialist government agency set up so that once a child is
diagnosed there is no need for collaboration to release funds. At
present, your life is put on hold while you wait for services. When
there are the needs of other siblings to consider, this is an
impossible situation.

This has had a major impact on our family and us as parents. The
price of our family life has been me scaling down my writing career
so I had the time to fight for provision, while my husband Duncan
worked as a magazine editor around the UK. While we were in Essex,
Duncan was working in London, doing a 180-mile round trip every
day, yet he had to take annual leave to attend review meetings to
discuss the boys’ needs. When we were told, after many assessments,
that no respite was on offer, he asked social services: “What would
you do if we left Chris on the doorstep one day?” The response:
“You would be prosecuted for abandonment.” Yet if by doing so, we
demonstrated that we couldn’t cope, we would get support more
readily.

In researching my book, Marooned, I have come across parents who
have sold their houses and whose marriages have broken up as a
result of the strain of fighting for provision. One mother faced
sending her son to boarding school because, as she put it, she
“didn’t have a clue really how much autism would affect our lives,
particularly the older he gets and the stronger he becomes”. Family
and friends often don’t cope with the restrictions these
challenging behaviours pose. Social care professionals and society
need to be made more aware of the practical problems of living with
autism.

The collaboration between education and social services can also be
appallingly bad or entirely absent. At one local authority I had to
issue a summons to the director of social services just to get
someone to turn up to a special education needs tribunal for Chris
so that education and social services would collaborate. And social
care assessments are often out of synchronisation with education.
On another occasion we found ourselves in the position that a core
assessment, which would have helped Chris gain a day place at a
specialist school, came two years too late. By this time his
behaviours had become so severe no local school would accept him.

Support costs money, but local authorities could actually save
money in the long term if they shared budgets and collaborated more
closely. It is far easier and cheaper to intervene with appropriate
services before families break down, than to leave it until it is
too late, at which point the state has to take responsibility full
time.

We have faced financial ruin and constantly re-assessed what we do
as a family to limit the impact of Chris’s behaviours on Chloe and
Jacob. Despite all this, we have all amassed many happy family
memories.

If you are the parent or carer of a child with autism, and you
aren’t getting the services your family needs in one area, I would
recommend ringing other local authorities for information on the
likely level of education, respite and medical care in their area.
And then I would approach support groups in that area for a reality
check.

It is a lottery of provision across the UK. But there is a space
for your family somewhere. 

Kerry Evans can be contacted at
Kerry3E@aol.com  Her book
Marooned is out soon and is about families coping with
autism.