| Literature DB >> 32466092 |
Roy McConkey1, Marie-Therese Cassin2, Rosie McNaughton2.
Abstract
The social isolation of children with autism spectrum disorder (ASD) is well documented. Their dearth of friends outside of the family and their lack of engagement in community activities places extra strains on the family. A project in Northern Ireland provided post-diagnostic support to nearly 100 families and children aged from 3 to 11 years. An experienced ASD practitioner visited the child and family at home fortnightly in the late afternoon into the evening over a 12-month period. Most children had difficulty in relating to other children, coping with change, awareness of dangers, and joining in community activities. Likewise, up to two-thirds of parents identified managing the child's behaviour, having time to spend with other children, and taking the child out of the house as further issues of concern to them. The project worker implemented a family-centred plan that introduced the child to various community activities in line with their learning targets and wishes. Quantitative and qualitative data showed improvements in the children's social and communication skills, their personal safety, and participation in community activities. Likewise, the practical and emotional support provided to parents boosted their confidence and reduced stress within the family. The opportunities for parents and siblings to join in fun activities with the child with ASD strengthened their relationships. This project underscores the need for, and the success of family-based, post-diagnostic support to address the social isolation of children with ASD and their families.Entities:
Keywords: ASD; Ireland; autism; families; social inclusion: home-based
Year: 2020 PMID: 32466092 PMCID: PMC7288007 DOI: 10.3390/brainsci10050318
Source DB: PubMed Journal: Brain Sci ISSN: 2076-3425
Figure 1The logic model for the family-centred intervention.
The number and percentage of children rated by staff on outcomes achieved.
| Child Difficulties | Never Had a Problem | Was a Problem—Getting Better since Start of Project | Still a Problem at End of Project |
|---|---|---|---|
| Difficulty in relating to other children and in making friends | 0 (0%) | 68 (81.0%) | 16 (19.0%) |
| Awareness of dangers, road safety | 8 (9.6%) | 58 (69.9%) | 17 (20.5%) |
| Difficulty with change | 10 (12.0%) | 56 (67.5%) | 17 (20.5%) |
| Joining in community activities | 12 (14.3%) | 59 (70.2%) | 13 (15.5%) |
| Anxious, agitated, nervous | 18 (22.8%) | 53 (64.6%) | 10 (12.7%) |
| Extreme fear and nervousness, lack of confidence, depressed | 33 (39.3%) | 45 (53.6%) | 6 (7.1%) |
| Anger, temper tantrums, meltdowns | 34 (40.5%) | 40 (47.65%) | 10 (11.9%) |
| Problem with following instructions | 36 (42.9%) | 38 (45.2%) | 10 (11.9%) |
| Personal care (toileting, dressing) | 50 (59.5%) | 23 (27.4%) | 11 (13.1%) |
| Difficulties in communication: speech and/or language | 51 (62.2%) | 21 (25.6%) | 10 (12.2%) |
| Issues with school, homework, etc. | 53 (63.1%) | 25 (29.8%) | 6 (7.1%) |
| Problem with bedtime, sleeping | 58 (69.0%) | 15 (17.9%) | 11 (13.1%) |
| Unusual interest in toys or objects | 66 (78.6%) | 10 (11.9%) | 8 (9.5%) |
| Problems with play, keeping self-occupied | 67 (79.8%) | 14 (16.7%) | 3 (3.6%) |
| Eating | 69 (82.1%) | 5 (6.0%) | 10 (11.9%) |
| Unusual response to something new | 69 (83.1%) | 13 (15.7%) | 1 (1.2%) |
The number and percentage of families rated by staff on outcomes achieved.
| Issues Families Can Face | Issues that were NOT a Concern | Project Helped and No Longer an Issue | Project Gave Some Help but Still an Issue |
|---|---|---|---|
| Knowing what services and supports are available to parents and children | 3 (3.5%) | 70 (82.4%) | 11 (12.9%) |
| Managing the child’s behaviour, temper tantrums, and meltdowns | 23 (27.7%) | 38 (45.8%) | 22 (26.5%) |
| Having time to spend with my other children | 25 (29.1%) | 50 (58.1%) | 11 (12.8%) |
| Taking the child out of the house, joining in community activities | 28 (32.6%) | 40 (46.5%) | 17 (19.8%) |
| Communicating with schools | 36 (41.9%) | 41 (47.7%) | 9 (10.5%) |
| Relationships with siblings (or other children) | 36 (42.9%) | 32 (38.1%) | 16 (19.0%) |
| Finding activities all the families can join in | 37 (43.0%) | 34 (39.5%) | 15 (17.4%) |
| Worries about the child’s future | 41 (47.7%) | 7 (8.1%) | 37 (43.0%) |
| Lack of confidence in how to manage my child | 46 (47.9%) | 20 (23.8%) | 18 (21.4%) |
| Meeting other parents and sharing experiences | 44 (51.2%) | 38 (44.2%) | 4 (4.7%) |
| Understanding what it means to have Autism/ASD | 51 (59.3%) | 29 (33.7%) | 6 (7.0%) |
| Family quality of life | 65 (79.3%) | 12 (14.6%) | 5 (6.1%) |
| Main caregiver often feels anxious or depressed | 70 (81.4%) | 3 (3.5%) | 13 (15.1%) |
| Main caregiver has people to turn to if s/he has a problem | 74 (86.0%) | 7 (8.1%) | 5 (5.8%) |
The themes and subthemes reported as outcomes of the project by parents.
| Main Themes | Subthemes | Supporting Quotes |
|---|---|---|
| Impact on the children | Social Interaction | N is an only child and his social skills were lacking. But whenever she would have taken him out and interacted him with other children as well, we could see a very big change in the social skills (Mother S). |
| Improved behaviour | He was very frustrated, would have lashed out a lot, he would have cried and screamed a lot. So over time, she built up taking him out for like for a half an hour at one of the wee local centres … where anybody could come in with their children. And he actually started interacting with the kids. (Mother TR) | |
| Acquisition of new skills | The project helped my child to understand a lot of topics including personal safety, peer pressure, and safe strangers (Mother TA) | |
| Impact on families | New learning for parents | The project was a massive help to my son and our whole family, to help us understand his condition and work together as a family to help him. (Mother DH) |
| Increased confidence | They give us the confidence to think that you’re not doing a bad job … you’re doing your best. They were able to make people feel more confident in themselves that ‘I can do this’. (Mother H). | |
| Free time | I have a little six-year-old too. It’s very difficult for her when you have a little autistic child so, it gave me a bit of time with her. And she also went out too with the Cedar person at times, which also gave me a bit of time to do things about the house or go and do a bit of shopping and stuff like that. (Father). | |
| Meeting other parents | There was a family day and then a thing at Halloween and … you’re meeting other parents there as well with children who are similar, you know, so that’s quite good so it is. (Mother JO). |