As many as 9 out of 10 preschool children with autism still have major difficulties by the time they reach school age — despite having received early intervention services.
What’s behind the lag? One factor could be really basic: A majority of the parents interviewed for a published study said that their kids did not receive sufficient support at school.
Children with autism need intervention over a long period of time
Just because you get your son or daughter into an autism program at a young age doesn’t automatically mean that his or her needs will be met over the next several years. In fact, one researcher found that the vast majority of the children who had ‘grown out of autism’ still had major problems at follow-up — and some of them had indications of again meeting full criteria for a diagnosis of ASD.
A new doctoral thesis at Sahlgrenska Academy in Sweden explored these issues in a study where children who had received an autism diagnosis between the ages of 2 and 4.5 years of age were followed up after 8 years. (The parents of the children were interviewed when the children were between 9 and 13 years old.)
In her thesis, Martina Barnevik Olsson followed up a group of preschool children that had received a diagnosis in the autism spectrum, and who had previously received intervention from a habilitation center in Stockholm that specializes in autism in preschool children.
Remaining diagnostic symptoms
A majority of the children who had been given an autism spectrum diagnosis at preschool age had remaining diagnostic symptoms eight years later. They also had other neurodevelopmental disorders, even when they — as in this group — had received what is deemed to be adequate early intervention.
At follow-up, many of the children also had other difficulties that included attention and activity regulation problems, speech and language difficulties and disruptive behavior — in addition to the problems of autism.
“Most of the parents felt that the children had insufficient support in school,” says Martina Barnevik Olsson.
The thesis also investigated so-called regulatory problems (in this case, problems with eating, sleeping and excessive crying) during the children’s first two years of life, by mapping Children’s Health Center (BVC) nurses’ notes and comparing them with an age-, gender- and residence matched comparison group.
The results showed a significant difference between the groups, in regard to the number of times parents sought help for regulatory problems with the children. In the study group, 44 percent of the children’s parents sought help at least twice for problems with food, sleep or crying, compared to only 16 percent in the comparison group. Of the 15 children with the most help-seeking occasions, 14 were from the study group.
“Even if early regulatory problems do not necessarily indicate autism, the results show the importance of noting these problems at the BVC in order to support the families and follow the children’s development, as such problems can be an indicator of later developmental deviations,” says Martina Barnevik Olsson.
Follow-up is vital
The study also showed that even those children who, over time, no longer met criteria for an autism spectrum diagnosis, should continue to be followed up over a longer period of time. Many had remaining developmental problems and were in great need of continued support.