The long, silent scream (of a parent/carer)
Purpose – This paper seeks to present the viewpoint of a family carer of a young man with autism.
Design/methodology/approach – The paper presents the author’s views and experiences of caring for
a family member with autism. It is a personal account of the impact that ‘‘autism’’ can have on family
Findings – It is a long, arduous, lonely and silent journey that carers travel, long before any recognition
comes with diagnosis.
Originality/value – The paper provides a unique insight into the day to day experiences of a family
carer of a person with autism.
Keywords Autism, Parent view, Carers, Family, Medical care, Social care, United Kingdom,
Mental health services
Paper type Viewpoint
Lovely baby. . .
Lovely child. . .but isn’t he able to do this/that yet?
My standard reply, with a smile of course, was ‘‘oh, give it time, they tell me to give it time and
keep giving all the help . . . ’’ and our messages to our son were always encouraging; ‘‘yeah
go on, well done, keep trying . . . just do your best, that’s it . . . ’’
Having a child with developmental delay and dyspraxia (developmental coordination
disorder) means lots more daily help and guidance to be given. It is given in the everlasting
hope that one day the child will be able to ‘‘catch up’’/achieve own potential/manage with
less help later. As a parent, you need a constant ﬂow of energy, over and above the average,
in order to pursue the activities which will help your child to walk, talk, understand, and learn.
You are driven by the recognition that if you do not do this, who will?! It runs through
everything you organise as a family; trips out – what will help? What will s/he cope with
today? – ensuring it does not wear the child out for next day school.
In primary school years, your friends’ children enjoy similar activities (just do not need as
much help physically or to understand what they need to do!), so you do things together.
Then come the secondary school years, friends’ children have developed their interests and
friendships, are more able and independent than our son, so we get left behind; the sense of
isolation deepens. It is time to see whether your son/daughter develops/manages
friendships. Oh, well maybe still too difﬁcult . . . after all . . . he takes time to process what
others say . . . do not worry, there is time yet . . . no pressure . . . seems ok with the help he
gets in school . . . teachers say, doing o.k. . . . but ‘‘always on the edge of the group’’. Oh
dear, he must feel really alone? Son says, ‘‘I’m ﬁne’’. . . . We keep doing what we do to help
him; physical activities, help with personal organisation, help with homework, help to meet
with others, help to understand different situations.
Time passes, further education . . . further assessment for more support for that . . . then the
big decision – he wants to go on to study! (Wow, well done we say.).
DOI 10.1108/20441281211227210 VOL. 6 NO. 3 2012, pp. 141-143, Q Emerald Group Publishing Limited, ISSN 2044-1282
ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES