Thank you very much for the article. It helped me understand the condition and the challenges that both the person and the family experience.
My spiritual community has been a welcoming place for families and individuals who have Asperger Syndrome as well as adults. Articles such as this one remind me that we need to keep advocating for more applied research and services.
Best,
Bertie Mo in Ottawa, Canada.
Colin REvell <[log in to unmask]> wrote: Beyond diagnosis
http://www.guardian.co.uk/family/story/0...23,00.html
Beyond diagnosis
Rose Ballard always found her son Theo's behaviour disturbing and difficult,
and thought she must be a terrible mother. Then, when he was 22, he was
diagnosed as having Asperger's
Saturday March 3, 2007
The Guardian
We sat in the airless room for two hours, answering the doctor's questions.
Then he made his diagnosis. Theo had Asperger's syndrome. Theo was 22.
As we walked back to the car through the hospital grounds, a wave of relief
swept over me. I had a diagnosis, and for me it felt like I had at last
reached the end of a very long journey. I wanted to take Theo to Pizza Hut
and buy him a margherita with a cheesy stuffed crust - his favourite treat.
But Theo didn't feel like celebrating. He had a diagnosis, and to him it
felt like a life sentence.
Theo appeared to be a normal baby, but since he was two I have struggled to
raise him. His behaviour was constantly challenging: I found him awkward,
stubborn, argumentative and angry. Having two older children who were easy
to look after, I thought Theo was merely bolshy and that it was my parenting
skills that were lacking.
At the age of seven he began to have periods of unhappiness with no apparent
cause. He had a stable home, he had friends, he was bright and articulate
and good at football. So why did he ask all the time if I loved him? Why did
he say he was lonely? Why did he feel no connection with his friends? Why
did he refuse to try anything new - even when it was something all his
friends enjoyed? How could he say that he did not want to be alive, when a
moment later he would be singing?
There were so many questions I couldn't answer, but none of the problems
were severe, and neither did they form an obvious, coherent pattern of
aberrance for which there might be help. So I carried on, just doing my
best.
I tried to be interested in his world - when he was little I would answer
the endless quizzes he set me on Italian football: "Who is the striker for
Milan? Name a goalie beginning with S." When he was a teenager, he wanted to
share his heavy-metal music with me every day and I endured it, sitting
patiently on his bed, trying to find something positive to say about the
racket emanating from the speakers. He seemed unable to grasp that while I
respected his taste, mine was different, and no matter how many times he
played me his music, I would not enjoy it.
Theo got through school in spite of loathing every minute of it. He left at
16 with nine GCSEs, and then he got through college and was awarded a Btec,
but his teachers both at school and at college felt he could do so much
better if only he tried.
Then, two years ago, Theo had a depressive breakdown, quit his job and came
home to live. The GP prescribed Prozac and referred him to a counsellor, but
Theo scorned the way she repeated things back to him in "a soppy voice". He
saw a psychiatric social worker who said Theo had mild depression and a "Big
Dream" - Theo is idealistic and hates the way the world is, and does not
want to live in it. He refused therapy - his view of the world was correct,
he said, so why should he change it? I persuaded him to give a
psychotherapist a try, but after 10 sessions Theo said it was no help and
gave up.
After nine months waiting, Theo attended NHS group sessions for depression
and anxiety but he did not feel able to join in. He declared them "crap" and
stopped going.
Theo then saw a private consultant psychiatrist who said Theo had double
depression - chronic mild depression from childhood, and depression of more
recent origins. He said Theo needed aggressive treatment with drugs and with
cognitive behavioural therapy. Theo took all the drugs he had to offer but
he continued to feel miserable, and after six months he stopped taking them.
When the psychiatrist tried to engage Theo in cognitive behavioural therapy,
Theo became upset and angry, saying he didn't want to be brainwashed.
The GP now had information from the consultant psychiatrist that Theo's
problems were rather more serious than a "Big Dream" but said there was
little value in referring Theo to the NHS psychiatrist as the post was empty
and filled by a series of locums. He thought Theo needed continuity of care.
Desperate to get Theo some help, we paid for an appointment with the senior
partner of the original psychotherapist.
After six months of seeing this therapist, there was a breakthrough. The
therapist suggested that he might have Asperger's syndrome (AS) and that
this could be the root of all his problems. He read about AS, and so did I;
the description seemed to fit.
So, two months later, we wound up in the airless room of a specialist NHS
unit, being assessed, and we got our diagnosis.
From a purely selfish point of view, this explanation still feels like an
absolution: Theo's problems are not my fault. My inability to understand
him, to make him happy, to help him find his way; these things have made me
feel so bad at mothering that sometimes I thought it had been a mistake to
embark on the journey.
Children, teenagers and adults with AS can be even more vulnerable than
autistic people because their sometimes crippling personal problems are not
obvious to other people - lay people, professionals, even parents - and so
they get no help.
Books such as The Curious Incident of the Dog in the Night-Time have made
some of the symptoms more well known, but although there is a cluster of
common dimensions that affect people with AS, everyone has their own
individual take on the disorder.
The commonly known problems are difficulties with social interaction, an
inability to hold eye contact, a dislike of touching, an inability to read
non-verbal communication, a propensity to be over-literal, an obsession with
routine and poor physical coordination. Although depression frequently
accompanies AS, I had not come across it in popular media coverage.
Theo is articulate and charming, shakes hands readily and holds eye contact,
but his hatred and fear of change makes undertaking new tasks - or making
changes to the way he lives - uncomfortable or frightening, sometimes
unthinkable.
His inability to imagine the future makes it impossible for him to plan
ahead, or to work towards something he cannot envisage. His perfectionism is
so extreme that he is paralysed from doing anything. So while as a child he
could draw well, and write lively and engaging stories, he thinks he can do
nothing now.
Theo is reliable, honest and responsible. (His first employer thought so
highly of him that when Theo, bitterly unhappy, gave his notice, he was
immediately offered a pay rise.) His hatred of being taught, and of taking
orders, makes employment problematic. He says he cannot face the stress of
another job.
Taken together, his difficulties make him feel that embarking on an
independent adult life is a frightening and arduous endeavour.
His diagnosis of AS felt like the end of a search for an explanation, but
what happens next? How does the NHS provide help for a condition that has no
cure?
Theo was referred to an NHS counsellor who specialises in helping people
with AS. There was a nine-month waiting list, but after a lifetime of
unhappiness for Theo, and the consequent fallout in the family, any delay in
getting help seemed insupportable, so we paid for Theo to see her privately.
After three sessions, Theo gave up, saying that it was no help. The
counsellor agreed. She said that while Theo is "living in a capsule" at home
with us, he is facing no demands and she cannot help. She says he needs to
move out to live on his own by himself, to interact with the world. When
someone gets to Theo's age without a diagnosis, things can be difficult.
Young adults are not open to learning coping strategies in the way that
children are.
We persuaded Theo to apply for a housing association flat. The counsellor
supported his application so he is medium/high priority, but there are more
than 200 people waiting for 17 flats.
And work? Theo can't face work. If he did, the National Autistic Society
runs a scheme called Prospects, offering guidance, training and support. But
our local scheme recently closed down, because of a lack of funding.
So Theo is stuck. After years of struggle and unhappiness we thought we had
found some kind of solution. But even with a diagnosis, we still don't know
how to help Theo move forwards, into his life.
· The National Autistic Society offers advice and information to people with
autism and Asperger's syndrome, and their families. autism.org.uk, helpline
0845 0704004
· Both Rose Ballard and Theo are pseudonyms
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