It takes a team to support parents of adult children with ASD

Team Around The Adult – Why We Need A Community

Children with ASD attending school have teams of support around them, often without parents having to ask. There is an IEP, an aide, teacher, consultants, and professionals giving input like a speech pathologist or occupational therapist. If your child is receiving services from an agency, there are usually multi-disciplinary teams in place to provide guidance and therapy. Once that child finishes school, these teams often fall away and the parents become the ones finding opportunities and programs for their adult child.

This has been my story for my two children, ages 19 and 21, since graduating from high school in June 2017. It has been overwhelming trying to put a team in place around them now that they are adults – the services have simply fallen away. I have attended adult resource fairs, parent information nights, and spent countless hours searching on the internet for programs and places for them to go. Despite my best efforts, I continually hit dead ends – either the programs are full, not suitable, too expensive, or the times don’t work. I also have to make sure the right staff is in place to support them when  I find a program.

Why Parents Need Guidance

There is a tendency to think that the parent is the child’s best advocate and they should be finding the opportunities. While the advocacy piece is often true, knowing where to look for services is often too difficult unless the parent is well connected. We need organizations to link us to good programs. Agencies often work together and know each other; they know of openings, upcoming classes, etc. Hiring in-home staff is challenging if you don’t know where to look for the staff, conduct an interview, or do the paperwork that is often required.

A good place to start is contact your local autism society. They offer information nights, help with applying for adult funding, work with various groups in town, hear of opportunities, receive resumes, and most will have pamphlets from organizations. Many have parents of adult support groups  – other parents are great resources.

You Need Someone Behind You

I found out the hard way that walking into places to ask for opportunities for my children went nowhere. I just didn’t have credibility on my own. On the rare occasion if I was able to secure something for my children, I often had to promise something in return in terms of supporting the organization.

Adults with ASD need their own independent advocate or representative that can approach an organization on their behalf. There needs to be a professional that can say they will provide the support or training that person needs to be successful.

Here is an example of what happened to my son, Marc. Marc was in an employment training program that I found through a local agency. He did two, eight-week sessions of employment training. While I received weekly reports on how he was doing, I really didn’t have a clear picture on what he could and couldn’t do in regards to the skills they were teaching him. At the end of the training, I was told I was going to be given a list of potential employers that I could approach to ask for a job for Marc.

I knew right away this would never work. No employer would take my son seriously as a candidate for a job with me giving the hiring pitch. Parents and relatives can’t be listed as a reference on a resume. I went back to the agency and said no – they had to come up with another plan for employment. I knew Marc was employable, but not with his mother at his side.

The Pilot Project

The agency decided to create a pilot project to support Marc working at a movie theater one afternoon a week. He had his personal aide with him as well as a supervisor from the employment training program. Marc completed 12 weeks of training with weekly input and support from the agency. I was also sent weekly progress reports. Any issues that arose on the job was solved as a team. This collaborative effort paid off. Marc has been asked to continue with the theater training program this fall with increased hours. He needs more time to master the work tasks, but his work team can see that he will be able to do that with more time. Without the support of this agency, this work opportunity would not have been possible. The movie theater would not have given Marc the work experience if had I approached them on my own.

Increased Independence

Without the support of a larger community, independence is more difficult. An adult needs the chance to try new things without the parent always being there. My kids act very differently with other adults and are much more willing to do things for themselves if I’m not there. I also have a tendency to jump in too fast if I see my kids struggling.

With increased independence also comes safety risks. Parents can have a harder time knowing what these are in certain situations or how much you can let go based on skill level and understanding. This is where professionals can assess and help that adult make those steps forward safely and with confidence.

Familiar in the Community

Although we live in a large city, I’ve tried to get my children connected with certain places so that they are known when they go there. We’ve done this at restaurants, movie theaters, the library, leisure center and Farmer’s Market. Being known eases their anxiety but also helps community members look out for them. Again, this increases independence and takes the onus off of the parents to always having to be there.

Parents Need Their Own Life and So Do Their Children

If I did not own my own business and worked at a regular 9 – 5 job, I would have been fired this year due to missing too much work. I’ve had staff cancel less than hour before their shift starts, down time for both kids during the day and they are then at home, and searching for programs has taken up hours of my day when I should be working. Even when I do find programs, those end and the search starts again.

Parents should be able to have a life. It’s a natural evolution to become an empty nester and retire. There are days that I worry this will never be a reality if I can’t get a solid, steady team around my adult children. None of us have the same energy levels we did when our kids were young. We deserve a future to pursue things that we’ve put on hold. Our kids also deserve a life which is meaningful and fulfilling for them with some separation from us. We’ll always be their parents, but our kids deserve a chance to spread their wings too and find what makes them happy.

Further Reading:

Adults on the Autism Spectrum Leave the Nest: Achieving Supported Independence

Adult Life with Autism Spectrum Disorder: A Self-Help Guide

Life and Love: Positive Strategies for Autistic Adults

 

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6 Comments Moderation Policy

  1. Elaine says:

    Hi Maureen, wondering if you know about the housing opportunities going on through the Sinneave Foundation – Aspies group?  The next meeting is this thursday night.

    • Elaine, I do know about this group as I was part of the original group that was together before Aspies formed their own group. I never have care in the evenings for my children and I do travel a lot with my company so I am away quite a bit. I work in Europe and am most impressed by what some of the countries have done in housing for people with autism. I am hoping to bring these models here to Canada.

  2. Shirley says:

    beautifully written, from the heart. as always!

  3. Sandra says:

    Maureen, what an amazing and thoughtful message you’re sending here. I just wanted to let you know you are an amazing human being and what you do is making a big difference.

    • Sandra, thank you for your kind words of encouragement. So often, I feel like I am failing because despite my best efforts, I can’t get the support my children need. You’ve really made my day!

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