Karola Dillenburger looks at research on
improving the role and influence of parents in special therapy in
the treatment of children with autism.

About one in 300 children (and three-to-four
times more boys than girls) from all geographical, cultural and
social backgrounds are diagnosed with varying degrees of autistic
spectrum disorder (ASD). When aged about 18-30 months, these
children begin to show very poor language, communication and
interaction, and show severe excesses of repetitive behaviour.
While the exact causes of ASD are unclear, there are many different
ways to treat the disorder.¹

During
the lengthy process of professional diagnosis and decision-making,
parents frequently feel powerless. One parent commented that
between the ages of 20 months and 47 months their son was seen by
dozens of health professionals, including several community medical
officers, audiologists, ear nose and throat specialists, speech
therapists, psychologists, paediatricians, an occupational
therapist, a physiotherapist, and several health
visitors.² Consequently, parents taking a
real and active role should be an important part of any
treatment.

In the
UK and Ireland applied behaviour analysis (ABA) is increasingly
becoming the preferred therapy for many. Thirty years of
high-calibre scientific research has proved the effectiveness of
ABA. In the US, the surgeon general and Supreme Court of British
Columbia found that “É it is beyond debate that the
appropriate treatment is ABA.”³Recent research by McElhinney in
Northern Ireland looked at what parents thought of the
effectiveness of, and their role in, ABA treatment. The main
findings were that ABA:

– Was
thought to be highly effective in improving problem behaviour,
gross and fine motor skills, obsessional behaviours, communication,
concentration, self-help skills and social skills.

– Had
a extremely positive impact on family life as behavioural
improvements in the child enabled parents and children to function
as a “normal” family – going on outings and holidays. Parents felt
equipped to manage difficulties: “It made me worry less and enjoy
my child more.”

– Gave
parents more self-esteem and confidence in achieving positive goals
in life: “I now feel capable of helping my son.”

–
Empowered parents in their relationship with professionals: “I
would be more aware of my child’s needs and they know that I am
credible and not to be fooled”; “I don’t intend to waste further
time or energy on appointments with health or social work
professionals who can give no practical support.” One father was
getting a lot more of what he was asking for, including money for
training courses. Another father said that he received a “more
enthusiastic attitude from the educational
psychologist”.

– Gave
parents more hope for the future: “It has given me hope that I can
improve my daughter’s life without being dependent on professionals
and their opinions”; “I see my child move out on his own and I
enjoy my retirement and grandchildren, and autism becomes an
afterthought.”

McElhinney’s research shows that
ABA is a highly effective evidence-based treatment that promotes
anti-discriminatory practice through empowerment. In Ireland, a
recent autism task force report recommended that ABA should be made
available to all parents who request it. The question that remains
is whether statutory providers are going to act in
accord.

– M
McElhinney, The Impact and effectiveness of training in applied
behaviour analysis on parents of children with autism and their
children, Queen’s University, Belfast, 2001.

Karola Dillenburger is lecturer,
school of social work, Queen’s University,
Belfast

References

¹ M Ives & N Munro,
Caring for a Child with Autism – A Practical Guide for
Parents, Jessica Kingsley, 2001

² M Keenan, KP Kerr, and K
Dillenburger, Parents’ Education as Autism Therapists,
Jessica Kingsley, 2000

³ Supreme Court of British
Columbia, docket C984120