Support groups and stereotypes

Recently, I was approached by a facilitator of a support group that I attended a few years ago to write an endorsement of the group in a similar way that I write my blog posts. I decided to post it here because it might be of some interest to other parents of children with disabilities:

My experience with support groups is limited out of personal choice. Over time, I have become aware of many different types of support groups through organizations and health professionals. However, because of my challenges with socializing with my peers, I find many support groups more stressful than supportive for me.

I sort and received a diagnosis of autism for myself when my two sons were young before they were also diagnosed with autism. With the knowledge that there is a strong genetic component to autism, it is not unusual for parents of children with autism to have social communication difficulties themselves

Fortunately, there is one kind of support group that I found very valuable and rewarding to attend. That type of support group is the kind of group where the focus is on the children. When the focus is on the children, I can chose to play with the children, help set up or pack up activities and be social with other parents in the amount that suits me best for each.

PlayConnect Playgroup and MyTime were two such child-focused groups. These groups were free to attend and were specifically funded for children with additional challenges or disabilities. A facilitator (and/or play helper) was employed for each group to set up the activities for the children, facilitate discussions about respite information, agency supports and services and to organise guest speakers to present more specific information to the parents.

Although, my children were not always interested in playing with their peers they loved to play with me, in fact they expected it and demanded it. My boys were what you might typically refer to as ‘clingy’. I was my boys’ best playmates in the groups, although there were some lovely interactions with other children from time-to-time.

The children in the groups often freely moved around each other, while they were encouraged to interact with each other they certainly were not forced too and were given space to explore the activities, toys and equipment set up inside the room and outdoors. I was grateful for the opportunity for my boys to spend time with other children with disabilities and get to know them. It is the best antidote to prejudice.

Although, there was very little judgement or prejudice among the children, my boys were very protective of their food. Like me, my boys have enormous appetites and were often the first to sit down for snack and the last to leave. While eating their snacks, they would put their arms around their plates and lean over their food to prevent other children from taking their food and if they suspected that someone was about to try they would yank their plates away from the child and closer to their chests. In fact, it’s the only time they didn’t spill their food.

I was fond of all the children’s idiosyncrasies, including my own boys’ quirks. But it wasn’t just about quirks. In the PlayConnect Playgroup, there was one child who nearly always smiled a beautiful beaming smile, which never failed to make me smile. There was one child who never smiled at playgroup and often became overwhelmed and upset especially indoors. I felt sad for him when he wailed, which indicated his distress, as did my boys who became agitated and a few times even cried along with him/ for him. However, when that boy climbed back and forth over the rocks that lined the garden it made me feel calm and reminded me of how much I used to love climbing rocks as a child.

In the PlayConnect Playgroup there were boys* like my boys who would bluntly and honestly say what they were thinking, boys who were passive and quiet and boys who were active and loud. There were boys who were clumsy and boys who were athletic, boys that liked trains and boys that liked animals. Actually most of them liked both trains and animals but care must be taken not to slip into a stereotype. I wasn’t exposed to toy trains as a child, so I don’t know if I would have liked them or not but if I had of known about the stereotype of children with autism being ‘obsessed’ with trains (and if I had of known I also had autism) I would have rejected them outright. I don’t like to be boxed in a category**, it’s the reason I rejected the colour pink.

There was as much difference between the children in the PlayConnect Playgroup as there is for those children without autism if not more but they all shared difficulties in social communication (those difficulties varied), some had obvious sensory challenges (which also varied from touch to sound to proprioception) and some had obvious ‘restricted interests and repetitive behaviours’ (once again, those interests and behaviours varied). These additional challenges made typical playgroups stressful environments for some children.

Like most playgroups that I had attended with my children there was a routine of sorts. However, the PlayConnect Playgroup, which was specifically for children with a diagnosis of autism or symptoms of autism it was even more structured and included visual schedules and cues. My children and I find routine and visual prompts helpful as do many children with autism so the group really was tailored to our needs.

Being a lover of routine, we were always reliable attendees to the groups. We rarely skipped a week. The number of children attending the PlayConnect Playgroup at any one time were limited to provide a smaller less intimidating group than other playgroups, which also enable us to receive plenty of one-on-one attention from the facilitator.

What I most appreciated about these playgroups was that the parents tended to have a greater understanding and acceptance of the different needs and behaviours of children with disabilities so I felt more connection with the parents than I would in non-specific playgroups. In non-specific playgroups, I felt more exposed and vulnerable to judgement.

It just so happened that the facilitators and play helpers for both groups also had children with autism themselves, which helped enhance our connection and their connection to our children.

PlayConnect Playgroup and MyTime played a wonderful role in our lives when my boys were young. The groups were fun and educational on many levels (through play) for my children and they helped to support me with knowledge, resources and connections.

I hope that groups like these can continue to be funded to support families like mine because they really helped us to fulfill our unique needs and develop connections with other members of the community where non-specific groups had been less successful.

*Nearly all of the children with autism who attended the PlayConnect Playgroup were boys so my generalised observations of the children in the group can only be extended to boys. There is much discussion about whether girls are under diagnosed in the population. A study byDworzynski et.al. (2012) showed that girls were less likely to meet diagnostic criteria for autism even with the same levels of autistic traits. Subtle differences in symptoms have been observed in the scientific literature (Hartley 2009) with girls experiencing greater deficits in communication, while boys have more stereotyped and repetitive behaviours and interests. Girls may also experience more sleep problems and affective problems than boys with autism (Hartley 2009). These differences led the researchers of this study to suggest a need for more sex-specific diagnostic and intervention strategies (Hartley 2009).

**I do not consider my diagnosis to be a ‘boxed in category’ (refer to my previous post on my personal thoughts on diagnosis).

References:

Dworzynski, K. Ronald, A. Bolton, P. Happe, F. How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders? Journal of the American Academy of Child and Adolescent Psychiatry 2012; 51(8):788-797

Hartley, S & Sikora, D. Sex differences in autism spectrum disorder: An examination of developmental functioning, autistic symptoms and coexisting behaviour problems in toddlers. Journal of Autism and Developmental Disorders 2009; 39(12):1715-1722

 

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