Love is….

…coping with a child who has Asperger’s syndrome.
Trainee social worker Julie Hooper tells of the joy and
tribulations of being a mother of her son with Asperger’s. And the
lack of social services.

Have you ever stood in a supermarket queue and heard people
muttering about the disruptive child in front of them? That child
could be mine. His name is Fox, he is 4 years old and suffers an
invisible disability called Asperger’s syndrome, which is a
neuro-biological disorder affecting his social interaction.

Has it ever occurred to you that the child climbing on top of
the checkout conveyor belt has an obsession? That he feels an
irresistible need to reach for the light that is hanging low from
the ceiling, or to explore the mechanism of the conveyor belt? And
when he approaches you and stares, sometimes without talking to
you, do you understand how difficult it is for him to interact with
you?

Or will you be annoyed if he latches onto you and follows you
around the shop without speaking to you, just staring and smiling.
Or would you realise that he wants to make friends with you but
doesn’t know how to!

All of these scenarios affect my family every day of the week.
The child that is biting, kicking and hitting his parents in the
car park is not being naughty and there is no need to criticise the
parents. When you see me talking calmly to him, not screaming and
not smacking, do you see the image of a weak parent or do you see a
parent nurturing their child when he cannot handle the situation?
That is my child, a very special child, who needs a firm but gentle
guide through life.

I ask you these questions because I find myself asking them
every time we go out of our front door. My son has an attention
span of 30 seconds – how long does your shopping take?

Asperger’s syndrome has left my son feeling uncomfortable in
situations he does not understand and this manifests itself with
him scratching his face. He does not always recognise body language
and facial expressions and if he is following you round a shop and
you merely scowl at him he will not stop, he hasn’t read your
signal.

His language is advanced for his age – on the surface. But if
you want to confuse him use a strange story – mention that your
friend “bit your head off” at work today for example and leave all
those unanswered questions in his mind. Why is your head still on?
How did she bite the head off?

This is a glimpse of life with Asperger’s syndrome. Fox has many
obsessions. He loves soft clothing and will need to have the labels
removed. He loves lights, tow bars, water and mechanisms. He loves
to systematically line up his cars. He loves playing with trains.
Games can be interrupted for most children but those with
Asperger’s will find it very distressing to leave an activity half
way through, and it will be immensely difficult to distract him
from doing what he set out to do until he has achieved the desired
result.

We have to avoid supermarkets with low level lighting especially
over the checkouts. Some shops have light switches at a low level;
imagine how many tow bars there are when driving through town – and
we know about every one that is spotted!

An example of this obsessional behaviour occurred recently at
3am. I was tired and fell asleep; Fox was playing beside me in bed.
He decided that he would go down and check the petrol in my car,
which he did, unlocking three locked doors in order to get out to
the car. He started the car, and was revving it repeatedly when a
neighbour rang the police who brought Fox in. Fox asked them how to
get the car into reverse! We haven’t managed to find a child car
seat yet that Fox cannot undo. Therefore he sits in the back of the
car without a restraint and people glare from their cars, faces
that incriminate that you are putting a child at risk – yes we are,
but what is our alternative?

Fox has difficulty with a raised level of noise. Busy places
such as shopping malls, shops and schools can lead him into a type
of hyperactivity – even when my two other children come home from
school the noise level within the house is raised and so Fox races
around the room hitting those who get in his way.

Luckily for us there is one thing that will keep him occupied
for a while – Scooby Doo. Fox is as obsessional about the Scooby
Doo cartoon as he is about cars, trains and lights. This obsession
will pass in time to a different cartoon, last year it was the Lion
King. But it is only his obsessions that keeps Fox focused for
longer than 30 seconds.

Fox sleeps for four hours a night, so together with the other
challenges I have described you might expect that we would receive
some support. We have tried. We telephoned our local authority
three times requesting an assessment of need only to be told that
he isn’t a child protection case and that they don’t offer
baby-sitting! Fox apparently doesn’t meet the eligibility criteria
though nobody has visited us to come to this conclusion. It feels
to us like another judgement from a society that doesn’t understand
or care.

Ironically, I myself am a student social worker, and am reminded
every day of the need for a non-judgmental attitude, which I
believe I have. I understand that the comments I receive about my
son when I am out shopping comes from ignorance, although I cannot
understand how a local authority social services department can
assess a case like ours over the telephone. It has made me question
why I am studying for a degree in social work. But it has also led
me to the conclusion that I will be a better social worker from the
experience of looking after my son, and I can only thank him for
the joy, love, fun and knowledge he gives me.