10 years ago when Marty and I first started our journey as parents of a non-verbal, extremely anxious child, we had some very specific misconceptions. For example, we had to learn the concept of normalvs neurotypical … and start to understand our responsibility to help our child grow to be the best person he can be, rather than trying to make him “like normal kids”.
The Autism Community is (mostly) Self Educating
As a community, when we see facebook postings, emails or message board comments with things like “cure my child”, “cause of autism”, “making my child act/be normal”, etc, we typically react in one of two ways. Sometimes (let’s be honest), we react to words like “normal” a fair bit too harshly, which often leaves people who may have just recently received a diagnosis feeling attacked and unwelcome. We need to be more careful about that.
The most helpful way to respond is to gently nudge that parent into the fold by helping them understand the community and culture — educating them. This way, we can help parents to stop thinking of their child as “broken”. All children have challenges of one type or another. As parents, we guide our children in the right direction using whatever methods we personally feel is most appropriate. Some prefer therapy and training, some use medication, some prefer natural approaches — the list is endless.
Sudden Up-Swing in “High Functioning”
Marty and I have been reading New Member applications for our Houston-based support group for about 4 years. In the last year or so, I’ve seen a growing number of parents describe their child as “High Functioning”. The parent of a recently-diagnosed child often includes long descriptions of what makes their child “high functioning”. In fact, it often feels less like an “introduction to the support group” and more like an explanation of why the Dr. got the diagnosis wrong.
Today a parent left the AutismHouston.com support group and sent me this message:
“My daughter is high functioning and I’m concerned that she may see others worse off and sort of lump herself in with them…she already has low self-esteem b/c of not being “normal” ….plus she is resistant to being labelled “autistic” or as having Aspergers.”
The term “High Functioning” has been around a long time. Its the recent use — and frequency of use — that its concerning. The thing I find most disturbing is that its used as an excuse to exit from the community entirely. Somewhat like the Cochlear Implant is leading some families to avoid providing support for their child (not joining the Deaf Community, learning sign language, or even “admit” their child is deaf, etc).
You Tell Me!
Am I off-base with my assessment of the recent use of the term “High Functioning”? Is it being over-used? Should it be an area that we should focus education and encouragement? Is “High Functioning” a crutch (or an excuse) for believing “My kid doesn’t belong with kids like yours.”? Feel free to reply with your comments below.
Many people join Autism support groups such as the one my wife and I host, AutismHouston.com, and then don’t actually attend events. This has some very unfortunate consequences. Parents of recently diagnosed ASD family members miss out on seeing they aren’t alone. And children with awkward or difficult social circumstances miss out on opportunities to make pier- and age-group-appropriate friends.
Over the years, I’ve heard several reasons for not attending:
- Parents have specific expectations of a meeting — and those expectations aren’t met (and everyone’s expectations are different).
- Everyone is a little uncomfortable joining a crowd of strangers, some more than others.
- Some parents don’t want their kids to see lower functioning children. I’ve heard this several times.
- Some parents are concerned about how to interact (if at all) with other ASD children for fear of offending or upsetting the child.
- Some parents feel all the other parents are “complainers” and a drag to be around. I’ve heard this many, many times.
After watching what works and what doesn’t at ASD Meetups, I want to share some suggestions for making the most out of a playgroup or playdate event for you and your ASD child.
Watch your Expectations: $80 Social Skills Group Sessions vs. Free Playgroup Events
What strikes me really interesting is hearing parents complain about the high-cost of social skills group classes, and how far they have to drive, and how inconvenient it is to drive into downtown — but they skip out on opportunities provided for FREE right in their own neighborhood.
As parents, we (or our insurance) pays professional service providers because they are highly trained, skilled, and professional. We complain about them being expensive, but they have to pay bills just like we do (and those bills include education fees and their college loans).
Free playgroup events can’t replace professionally-led social skills classes. Playgroup, or playdates are an opportunity to practice and reinforce what our kids are learning from their parents, school teachers, para-professionals, counselors, etc. We can tell our children “Say please”, and “Say nice to meet you.” But if we don’t help them practice with everyday situations, the teachings go in one ear and out the other.
Suggestions and managing expectations:
- Most ASD Playgroups allow members to suggest or organize meetings in their own area.
- Don’t expect (or desire!) a big crowd. You may see only 1 or 2 other families. Our kids don’t like massive crowds, so that works perfect.
- Participate. Unlike an $80 social skills class, we can’t drop our kids off or sit in the waiting room.
- Save complaining for later. Include the children in any conversations, encourage them to participate.
- Be uplifting, upbeat, and encouraging to both the kids and parents.
- Join a parents-only event to discuss uncomfortable school administration problems or complaints about your doctor.
- Lower your stress level when interacting with the other ASD kiddos. (See suggestions below)
Its not easy walking into a group of strangers. When it comes to walking into a park with 20 families, its hard to walk up and ask “Are you here with the Autism Group?”
Suggestions for managing discomfort:
- Agree on what to wear. If everyone (or at least several people) wear a specific color shirt, finding “the group” is much easier.
- If its a small group, the host can just tell folks she will have on a yellow shirt/hat/pants.
- Post yellow balloons at the park bench. Its very unlikely that someone else at the park will be using JUST yellow balloons. The Yellow Balloon trick will separate you from the birthday parties.
- Agree on a specific location and time. If the time is ambiguous, misunderstandings can lead folks to never want to return again.
- Remember that every other parent is just as uncomfortable, if not more, meeting complete strangers. Yeah, I know, that doesn’t help, but its important to remember.
- You aren’t there to impress other parents. You’re there to help your kids interact, and show your kids how adults interact with each other in a friendly way.
- Put philosophical differences on the back-burner. Kids don’t need to see us parents arguing about religion, politics, or the “Cause and Cures of Autism”. Go to Parent-Only events for that.
Some parents don’t want their kids to see lower functioning children.
Parents have told me they never came to events because they didn’t want their child to be around low-functioning Autistic children. The excuses ranged from being worried it would “damage their self-esteem” to “worried he will flip out”.
We want our children to be in a fully-inclusive, general education program. So it’s completely hypocritical for a parent to withhold access to social learning and friend-making opportunities from their children because there might be “those kinds of kids” at the event. Parents who use this excuse are no different than school administrators that think anyone with a diagnosis belongs in a different school.
Suggestions on how your child can benefit from associating with other ASD kids:
- Don’t rob your child of the self-esteem elevating experience of helping other children.
- Allow your child to practice working with and communicating with people of all ages and situations.
- Allow our kids to build their community without poisoning their attitudes with bigotry against other children.
- Teach your child to have compassion by actually showing real compassion for others yourself.
- Every parent tells me their child is a “High Functioning Autistic Child”. And then I meet their kids and realize that many parents are in denial.
Last thing on this subject: Can you really tell your child “don’t play with him, he’s more Autistic than you.”? I find people that say this kind of thing to be very offensive. If you are a parent that doesn’t let their kids play with “those kind of kids”, then never attend a playgroup. Ever. Send your spouse.
Some parents are concerned about how to interact (if at all) with other ASD children.
This one is really tricky. Unless you know a specific family’s situation, its hard to know the best method of interaction. Every child is different, and so is every parent.
One time when discussing a disagreement between my son and another child, the father ran over and loudly explained, “I can handle my own child.” It turned a learning opportunity for my son (and his) into a very uncomfortable and contentious situation. Instead of teaching the kids to work together, “dad” taught the kids that adults become aggressive and loud.
Good job, “dad”.
Suggestions on dealing with other ASD Kids and parents:
- Help your child practice asking other children their names (and if they like video games, and …).
- Don’t pressure kids to answer a question; someone may be non-verbal, or just shy. Either way, don’t take a non-response as a queue to start ignoring the child.
- Remind your child that some children don’t quickly (if at all) respond to questions, and to be patient with those who may be a little different.
- Remind yourself and your child that we keep our hands to ourselves. Some of us are huggers, some of us are really affected by any type of touch or physical contact. For some with sensory issues, simple shirt tags and bra straps can be very uncomfortable, so a hug may be seen as a sign of aggression, not friendliness.
- When you’re encouraging introductions between children, remember to ask “can I shake your hand?” before reaching out.
- Remind your child ahead of time that some children are painfully sensitive to perfume and chemicals. So they should remember not to say anything if they notice another child has bad breath or BO. Our ASD kiddos can be a little blunt, so this is an important social skill for them to perfect at an early age.
- If a parent becomes offended because you encourage the kids to play together or learn each other’s names, that parent’s expectations need to be adjusted. Tell me, my wife, or another host so we can get on the same page. If someone doesn’t want their child to be social with others in the playgroup, they stop attending playdates.
- Patients is key, with parents and kids.
Some parents feel all the other parents are “complainers” and a drag to be around.
Mom and dad: stop complaining when we should be helping our kids communicate with each other!
- Don’t huddle in a corner with other parents and let your kids run wild.
- Kids will play “all alone” in a massive group unless we as parents show them how to play together.
- If a child hears mom say to another parent “his teacher is a horrible person who doesn’t seem to care about autistic children”, why would that child cooperate with their teacher?
- Every time your child hears you say something bad about their teacher, you UNDERMINE the teacher’s ability to maintain the type of relationship needed for your child’s success.
- Non-verbal children can hear. They know their teacher’s name. If they hear you say their teacher’s name in an unfriendly or stressed or angry tone of voice, the non-verbal child can pick up on that. This can lead to the lack of cooperation. It does not help your child at all.
- Playgroup and Play Date sessions are about helping socially awkward or difficult children learn to interact and play together.
- Need emotional support, advice about how to handle teacher’s administration, etc? Attend or create a Parents-Only event!
Hopefully you found at least one or two suggestions helpful. Even if you don’t attend organized Social Group Classes, attend (and host) free playdates to help reinforce new social skills that will help them be successful. And allow them to socialize within the ASD community so they don’t grow up with feelings of shame, rejection and perpetual isolation that often accompanies growing into an adult with ASD.