Listening to parents reporting their search for a diagnosis, I was reminded of the quest for the Holy Grail. This is not a report of that quest, but rather a look at diagnosis from the parents’ perspective. In total, the 60 families in the study reported seeing approximately 270 professionals before diagnosis. This is a rough estimate, as many were referred back and forth between professionals; on average, each saw between four and five different professionals. Individual families reported seeing between one and thirteen professionals.
First, a little about diagnosis. The work of Lorna Wing (1980) has resulted in autism being seen as a spectrum disorder, rather than as one distinct condition. It has three underlying impairments—in social interaction, communication and imagination. These impairments can occur with any level of ability, from profound learning disability to superior levels of intelligence. To be given a diagnosis of autism spectrum disorder, these impairments must occur before the age of three years. It is a developmental disorder that gradually appears with time; therefore, the way autism presents in different people varies immensely, and diagnosis is complex. However, in order to get the necessary services for the child, and family, a definite diagnosis is essential. Families need to know what is wrong and why their child behaves in such unusual ways.
A semi-structured interview schedule was developed for the larger study, of which this is a part. This schedule focused on life stages, to collect information from carers about their life and support systems from the pregnancy of the disabled child to the present day. These life stages were:
- Pregnancy, birth and the neonate period
- Inklings—‘When did you first think something was wrong?’
- Starting school
In all but one case, prime carers were interviewed in their own homes. Interviews took between 2 ½ and 3 ½ hours. Most of the interviews were taped.
The 60 prime carers who took part formed three groups: those who had children aged between four and ten years, between thirteen and seventeen years, or ‘adult’ children aged over nineteen years. Therefore it was possible to get a picture of diagnosis over time.
Diagnosis now occurs earlier in the child’s life. Over the past sixteen years it has reduced from an average of seven years to an average of three years nine months. In the youngest group of children, it ranged from one year nine months to seven years. In the past, many were told that their child had autistic tendencies or traits. In the youngest group, 75 per cent had definite diagnoses. This is important, because if there is no definite diagnosis it is difficult to access the right services.
It is said that ‘there is no good way to give bad news’. However, some ways are more sensitive than others Previous research suggests that the diagnosis should be given to both parents, with the child present, in a private place, with time to ask questions and with a follow-up consultation. Sixty-seven per cent of the families in this study felt that they had been dealt with sensitively. Forty-seven per cent had their partner with them. Forty per cent received the news with just their child present. Forty-five per cent were given time to ask questions, and 50 per cent were given a follow-up appointment. Sensitivity has not changed much over the years, but it is now more likely that both parents are present. The diagnosis was usually given in a private place. There were some exceptions, where it was given over the telephone, or on the street, in passing. These incidents were reported more by parents of adults, so there seems to have been an improvement over time.
The most common reported feeling at diagnosis was shock. Irrespective of how sensitively they were informed of the diagnosis, 75 per cent of parents were shocked. Thirty-three per cent had been totally unsuspecting, and many had no idea what autism was. Twenty-five per cent were relieved—at last they knew what the problem was; now they had something on which to work. Sadness, acceptance, anger, confusion, depression, helplessness, denial, guilt, disbelief, mourning and fear were among other reported feelings. Many parents felt that, although they were given time to do so, they just were not able to formulate any questions at the time. When one considers their feelings, it is not difficult to understand why. Many said they just went home and cried.
After diagnosis, 93 per cent of parents went searching for information. This was the most common reported coping strategy. Ninety per cent sought support from friends and family. Seventy per cent took positive actions; typically they realised that they had to get on with life. Some went for counselling, others moved house to be nearer services, and others organised their lives around autism. Another 70 per cent looked for support from professionals. Forty-five per cent prayed, and 43 per cent coped by denying that there was anything amiss with their child.
Parents were asked about their concerns and unmet needs. They worried most about the future care and education of their children. They felt that there should be a trained team for diagnosis, which should be available as an ongoing support. Respite care was very important to parents; they wanted it to be more available and better organised. They felt that sometimes their particular family needs were not taken into account. Each life stage has its own difficulties, and parents felt it would be good to be given preparation for these. Other needs and concerns included better support groups, more acceptance from relatives, counselling, and greater cooperation between schools, workshops and families.
Social withdrawal was reported more at diagnosis than at any other life stage. This means that at a very difficult time these families withdrew from society, and society withdrew from them. Many families were at the receiving end of hurtful comments from family, friends and acquaintances. People minimised and denied the problems that the carer had with their child, often making the carer feel incompetent and vulnerable. One carer said: ‘I felt nobody asked, they did not want to know, they felt I was incompetent.’ Some family members were reported as saying: ‘There’s nothing like that in our family.’ Many were told: ‘You’re just imagining there’s something wrong.’
Recommendations to improve the services available to families have been made at a number of conferences and in reports to the Irish Society for Autism. The work is also in the process of being written up, so that it can be submitted for publication in an international autism journal.
- There should be a raising of awareness of autism in society in general. This could be done by means of a national autism awareness day, articles in magazines and newspapers, and in radio and television programmes. Perhaps this would increase understanding of the condition and reduce the incidence of negative attitudes.
- Information packs could be sent to health professionals, particularly general practitioners, and to nurses and doctors in health centres. These professionals are usually the first port of call for concerned parents. If they have a better knowledge and understanding, it should be easier for them to refer families to the appropriate professional straightaway.
- Diagnosis and assessment should be carried out sensitively by a multidisciplinary team, following the guidelines noted above. Families should be involved in this system, at all stages.
- Diagnosis and assessment should culminate in an agreed written statement of needs for the child, which should form the basis for all future plans.
- At diagnosis, a basic information pack should be given to parents, as they are unlikely to be able to absorb and retain much verbal information. Parents could then be invited to return, with all their children, extended family and friends, to another session when more could be explained and their questions answered. Such a session may prevent social isolation of the family, and aid in the development of an adequate social support system. Research has shown that social support is important for the well-being of all families—particularly those with disabled members. There are two areas of support, from professionals and from family and friends. Such support networks are seen both as fulfilling practical and emotional needs and as sources of helpful information.
- Regular case conferences that include the family should take place.
- Counselling should be offered as a choice for families. Parents, brothers and sisters could be offered workshops.
- Summer activities could be set up for children with autism; this may help all to survive long holiday periods. Perhaps their siblings could also be included. It would be good if such activities could take place in a specially developed resource centre.
- Finally, there should be the option for home visits so that professionals may help families to manage challenging behaviour and may get a better all-round picture of the child.
Some of these recommendations have been put into practice by Dr Rita Honan, Senior Clinical Psychologist at Beech Park Special Schools, Stillorgan, Co. Dublin. Under her guidance, clinical psychology students have developed information packs for families at diagnosis. She has organised summer camps for brothers and sisters. An outreach support for families has been developed, whereby students help them with their child, in the family home.