Saturday, 23 February 2019

Treatment of families with ASD by childrens services

There is very little out there about parents with ASD, there are many many articles around the "stress and pressures" of raising an autistic child and transitioning that child to adulthood. However many people don't see their autism as a negative thing, there are many positive factors of autism and indeed it can lead to particular career paths. The past view of autism as "low functioning" and "high functioning" are slowly being eradicated with the diagnosis being changed to ASD and getting rid of "Aspergers" diagnosis. However, many people, especially the medical profession and children's services see ASD as a "condition" or "illness" categorised by low functioning, sometimes mute individuals unable to sustain Independence, much less be parents.

The fact is that there are many wonderful parents out there who are ASD, many received an adult diagnosis of ASD due to the medical professionals blinkered view towards ASD and belief that you have to have significant "problems" such as being non verbal to gain an ASD diagnosis.  This systemic abliesm is also partly behind the constant threats of FII against parents trying to get diagnosis for children who may not present as stereotypically autistic.

I undertook a self selecting survey in order to show the experiences of families with autistic parents and/or children when going through the Children's Services system. The results were predictably poor.

As we have seen repeatedly, many of those dealing with the sometimes horrific consequences of children's services intervention and monitoring came into the system by asking for help.
Have yo had child services involvement?
Yes asked for help 40.6%
Yes referred by school 18.8%
Yes referred by medical professional 12.5%
Yes referred by someone else 28.1%
Forms response chart. Question title: Have you had childrens services involvement? . Number of responses: 96 responses.
A large proportion of the parents who believed themselves to be autistic, had avoided assessment due to fear of negative consequences 
"If either parent suspects they are ASD why do they not have a diagnosis?" 
Don't want a diagnosis 18.6%
Scared of negative reactions to my diagnosis 34.9% 
Refused an assessment 9.3%
Awaiting assessment 9.3%
Haven't got round to it yet 27.9%
Forms response chart. Question title: If either parent suspects they are ASD why do they not have a diagnosis? . Number of responses: 43 responses.
This fear of negative treatment seems well founded as in many cases parental ASD is treated negatively or raised as a concern

Families are more likely to self refer to children's services by asking for help if they have both parents and children with ASD 

Families who have both parents and children with ASD  seem more likely to ask for help and have social services intervention, but also more likely to have children taken into foster care. Out of those families with both ASD parent(s) and child(ren) 22.5% were taken into care, in those with only ASD children it was 16%

Advocacy services for parents with ASD dealing with childrens services seems very sparse, most parents with/suspected of ASD felt disadvantaged by the system. Only 1 (one) parent received advocacy support