This is a post is part of a paid partnership with Aeroflow Urology as part of the Chronic Illness Bloggers Network. All thoughts and opinions are my own.
Years ago I would have written this solely from a mom’s perspective. I would have listed the difficult parts of autism for me. But my daughter is 23 now. We have both had our struggles but now I see her out in the world, more independent than ever. I can clearly see the difficulties that are hers much more so than they are mine.
Lack of transportation is first on my list of things that make our life tough. Ashlyn is an adult, she should be able to go where she likes when she likes. Can you imagine your every need being based on whether someone feels like driving you? She has the communication skills to fill her prescriptions and go to the store for basic needs but she can’t get there.
We have no reliable transportation system in our area. No matter how much independence my daughter gains the lack of appropriate transportation will always keep her dependent on family or staff.
Long term care
If autism parents aren’t up during the night with their kids then they’re up during the night thinking about who will take care of their kids once they’re gone. The world is just not equipped to handle the multi-faceted needs of autism. Ashlyn is an adult now, living in a semi-independent living situation, but there is still SO much to do to make this work on a daily basis.
You know those instructions you leave for a baby sitter? If I were ever gone for a long period of time and had to write an instruction manual we would need additional space on our hard drive.
What’s the going rate for eight hours in the Social Security office? How about talking day staff into not walking off the job?
Once kids age out of school programs they become reliant on county and state programs. Unless you’re independently wealthy this can be one of the most difficult parts of autism. Staff through many county programs are paid so poorly that they are better off at a fast food restaurant. There is no incentive for them to have autism-specific training.
All those years of fighting for the best services when your kids are in school and they become adults and services plummet. I don’t even know how to begin to fix it, aside from winning the lottery.
Since this isn’t just about our struggle, I asked the many wonderful families on the Autism Shines Facebook page to share what the most difficult parts of autism for them and here are some of their responses:
I honestly thought this was never going to happen for us and then it finally, FINALLY did. But for many it doesn’t. Few people realize that it can take twice as many years to potty train a child with autism as it does a typical child. For some it’s a lifelong issue. I have friends who are forever in search of diapers to fit their children well into their preteen and adult years.
Aeroflow Urology has a complete line of diapers, pull ups and briefs to fit children and adults with special needs and/or incontinence issues. The best part about their products is that they are generally covered by Medicaid. If you’re searching for pull ups or briefs for older children or adults I don’t have to tell you how expensive they can get. Check out Aeroflow Urology’s line of diapers, pull-ups, wipes and more to see if they have a product that fits your needs. They will work with Medicaid and even ship to your door!
Ashlyn was a late talker. So many of her early frustrations (and mine!) came from not knowing what she needed or wanted. I can’t imagine if she still couldn’t communicate her needs or tell me what hurt. Many parents I know live in fear every day because their kids can’t tell them if something happens to them when they are away from home or if something hurts.
Besides communicating pain, there is so much more that lack of communication brings. Every parent and child deserves to hear I love you and say it in return.
The outside world
I’ve got to stop here and say, this one melted my heart. Many siblings chimed in when I asked what was tough about autism. Their number one problem was enduring the stares and pointing of others when they’re out and about with their siblings. Not the meltdowns or the time they’ve had to give up but the outside world not being tolerant enough. What amazing young people to be such supporters of their siblings.
This is the hardest part for so many families and then as they get older, for individuals with autism. In the early years it can overwhelming to go places. Lots of kids with autism run or touch everything or meltdown in public. A predictable place like home is so much easier for everyone. There are no birthday party invites and playdates are non-existent.
When they begin to yearn for friendships life can be twice as hard. As the parent you feel bad that your child doesn’t have a “place” and then at some point many kids realize it too. It’s heart-breaking to watch your child struggle for friendships when they want it so badly. Kids with autism grow up to be adults with autism still struggling to find a social circle where they feel comfortable. The best thing any of us can do is keep our minds and our homes open. A phone call, play date or dinner out can mean so much!
There is no end to the day-to-day needs of people with autism just like there is no end to the worries their parents face. If you’ve been here before, I’m sorry for the broken-record speech. But we need more. We need more than awareness. People with autism need support, understanding and a world that makes the space for them they deserve.
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