Why It Takes A Village To Support A Person With Autism
I recently renewed the service contract for both of my adult children with ASD. The process of meeting with my caseworker left me feeling like a failure and deflated. I think this was because my caseworker starting sentences with, “You should…” One example of this was, “You should go around the city and approach potential employers for opportunities for your children.” Does anyone know how hard it is to do that? Let me elaborate.
When my daughter Julia was 14, she expressed an interest in volunteering at a cat shelter. She was not eligible to volunteer until she turned 18, but I thought it would be a good idea to get her known to the organization. We started going to their fundraisers, visiting the pet stores where they had cats up for adoption once a month, we sponsored a cat every year at Christmas, attended their open adoption days, spoke with the volunteers, and our family adopted a cat. When Julia turned 18, I made an application for her which was rejected. I then had a phone call with the volunteer coordinator who nearly cut me off after 5 minutes. I began to talk about our adopted cat, their website that Julia visited everyday, the cats we sponsored etc. The coordinator then gave Julia an interview.
The interview, done in the traditional format, was a disaster due to Julia’s anxiety. She just couldn’t speak under pressure. I started calling out cat names from the website and Julia began to mimic their facial expressions from the photos, all by memory. The coordinator was very impressed as some of those cats hadn’t been on the website for 4 years. Julia did get the volunteer shift – one 90 minute shift per week and with some advocacy on my part, it was expanded to two shifts.
Now imagine doing that level of effort for every opportunity and times it by two because I have two on the spectrum. Is this do-able or sustainable working full time as well? What about when I am older, retired and possibly sick or disabled? And yet, there was my caseworker suggesting I find employment for my children on my own.
The intake meeting got me to thinking – it takes a village, a community effort, to support and individual on the spectrum and their family.
Why does it take “a village” or whole community to support an individual with ASD?
1. You Can’t Ask for What You Don’t Know
There is an assumption that parents or a person with ASD will ask for what they need, but we often don’t know what we need. If you don’t know that a support or service exists, you can’t ask for it. For example, when my son was in diapers long past the age of 3 it was a parent who told me there was a program to apply for that covered the cost of extended use of diapers. My caseworker never told me about this program, but I never asked because I didn’t know it existed.
Many parents don’t know about applying for guardianship once their child is over the age of 18 or how to access adult disability supports. Taxes can be confusing too.
Joining a parent support group can be helpful because there will be other parents further along that can share their wisdom. Some countries have family support programs to help parents navigate their way through the system and how to best support their child.
2. Time Constraints
It takes time to make phone calls, book appointments, find support workers/aides, check out activities, work and take care of family. Extended family members can be a big help in doing research, checking out a program or activity, or taking a child to their appointments. Schools can make parents aware of what is going on in the school community and surrounding area.
3. Sleep Deprivation
Many families have children with sleep disorders. There can be difficulties falling asleep, staying asleep or waking up too early. I experienced all of those things. For 10 years, I did not have more than 4 hours of sleep a night and it was not in a chunk. Chronic sleep deprivation affects judgement, mood, eating habits, energy levels and can add significant coping challenges. Having someone come in and spell you off even for a couple of hours can help you feel re-energized again.
4. Specialized Diets
Individuals with ASD can have a limited diet or only eat very specific foods prepared in a certain way. Some people can’t tolerate processed foods, gluten or dairy products. Catering to a specific diet can be time consuming. My two have both been picky eaters and neither eats the same foods within their diet. Everything has to be made from scratch.
5. Additional Challenges
Sensory issues, mental health concerns, co-morbid conditions, communication difficulties, and challenging behavior can make parenting very difficult. These additional challenges can lead to isolation, physical or mental health issues for parents.
6. Family Dynamics
There are many factors that can come into play – single parenting, sibling relationships, multiple children with disabilities, financial struggles, extended family members who live in the home, and new to a country are just a few.
7. Developmental Disability
A person with a developmental disability can experience difficulties in cognitive skills, social/emotional skills, speech/language skills and daily living skills which add additional daily challenges. Tasks can take longer to do or require assistance.
8. Feeling Overwhelmed
Here I am 22 years in to parenting children on the autism spectrum and I am still overwhelmed. Any time there is a transition (new school, activity, job, trip, etc.), the stress starts all over again. I used to think there would be a finish line – there isn’t one. Medical appointments, paperwork, school, the holidays, and staffing make me feel uneasy all the time.
So after reading these points, how can we help support a parent or caregiver of an individual with ASD?
- Make a few things for the freezer or a meal and bring it over.
- Offer to provide respite.
- Research programs and possibilities for a family like summer camp, sports, volunteering, etc.
- If you are over at the home, look around and see what needs to be done and offer to lend a hand. If the dishes are piled up in the sink, do them. Mow the grass, do the grocery shopping.
- Pick up pamphlets on support groups, services, supports – it can help to have something in your hand to hold on to and read.
- Communicate – ask how someone is feeling, coping, getting along in their day.
- Ask if there is something specific you can do to help out.
- Spend time with the person/family.
- Offer your skills and expertise. Ex. My mom was a grade 1 teacher so she taught my son how to read.
Every parent who has a child with autism is on a unique journey. Join hands with the family and walk with them on their path. Giving your time, love, and understanding will strengthen a family. You, in turn, will learn great things too.
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To the caseworker, what was your reply? I hope you sent him/her a copy of the blog. Curious if it made a difference in his or her approach.
Shirley, there was a long reply in that moment. I explained that as a small business owner, if a parent were to come with their child for a job interview it would lessen their chances of employment. A job coach or support worker would be different. I’ve had many ups and downs with my caseworker. Most of her responses to my concerns is, “Well, I know it’s hard out there.” She has no children herself. If I need help with something, it is always put right back to me.