HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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The 5 Biggest Mistakes That Parents of Asperger’s Children Make

The 5 biggest mistakes that parents of Asperger’s children make:

1. Waiting too long to take action.

I have worked with children who were diagnosed very early with ASD’s and looked like severe Autism (banging head into the wall, screaming, and flapping arms all day with no initiation of communication) at ages 2 and 3 but with early intervention and treatment looked like mild Asperger’s or even normally developing by the time they were five. When I first see children who are already early elementary school aged and never had services because people thought they were just late talkers, they have missed the optimal time for intervention and the prognosis for improvement is not as good. 

We absolutely must catch them when they are very young and provide treatment. We need to get the message out that it is better to help kids who would have been fine either way than to overlook kids because we think they will “grow out of it”. Time and again I get kids who are 5 years old and the parents have known something was not coming together right for years. We have to get rid of the stigma/fear and show people that getting help early works and is worth stepping through the fear and advocating for the services their child needs.
 
2. Overlooking the benefits of routines and consistency.

Example: Johnny wakes up one morning and eats breakfast, brushes teeth, gets dressed, then goes to school. The next morning Johnny wakes up and is surprised to find that he has to take a bath before getting dressed. Johnny has a tantrum and becomes aggressive, hitting, putting holes in walls, and the whole family is late to school and work and stressed out.

If you don’t build in the predictability where it is possible, he has to find ways to cope and you might not like his preferred coping mechanisms (rocking, flapping, withdrawing, tantrum). Certainly, we cannot predict every situation in life, but having a core routine within the family is usually very helpful for the child with Asperger’s. Preparing a child for changes in the routine is also helpful.

In Johnny’s case, perhaps the water was not working the night before and you had to get the bath before school. If Johnny retains verbal information it is important to tell Johnny the night before what to expect the next morning. Ideally you would make a schedule (written, pictures, photos depending on his abilities) so he can visually see what to expect out of the day.

This is so helpful when changes in routines are necessary. That being said, it is also possible to OVER schedule the routine. I have found that children with Asperger’s are often so dependent on their routines that it can be very disruptive to alter them when life happens. For this reason, many parents have found it helpful to build adaptations and variations into their regular routines. They teach their child to cope with the many changes in routines that happen all the time. 

3. Friendship failure.

Failing friendships are a challenge some higher functioning children with Asperger’s can face. For example, Jane, a 7 year old, is friends with Leanne. Jane has Asperger’s and does not like to be in large groups of people. Leanne is also 7 and is the daughter of Jane’s mother’s best friend. Jane likes to swim, Leanne likes to talk to her friends. Jane often becomes frustrated and is not sure what to say when Leanne is around. She doesn’t read her social cues and does not know how to get into the conversation, nor does she have a desire to talk about what Leanne and her friends are talking about.

Find activities that your child is truly interested in and help them cultivate friendships within those activities. In Jane’s case, she enjoys swimming so finding a swimming team or class that she can attend regularly and then role playing and coaching her to help her with social skills related to those relationships will evolve into people who know Jane and share an interest with her. Ideally, in the future those friendships will turn into a network of advocates and friends who will share Jane’s interests and appreciate who she is as a human being.

4. Expecting the child to know what to expect when they don’t, this is particularly true in social situations.

Imagine how a birthday party must seem to a child who has never been to one. People singing while a large bright colored blob that is on fire is brought out in the dark (the cake with candles). Imagine how it would feel to go to your first day of Kindergarten when you don’t know where to go to use the toilet, are not sure how to ask other people if you can play with them, and don’t particularly care much for being in a room full of people.

I find that children with social skills challenges do best when placed first into social situations that interest them AND have lots of structure. For instance, even an uncoordinated child will often enjoy non-competitive group sports when the rules are very clear.

Ideally as they age you expose the child to more social situations and provide them with information about what to expect and how to behave. For instance, if they are meeting their teacher, you let them know that they will be meeting the teacher and what it involves. Meeting the teacher involves going to the school, walking into the classroom, saying “Hello, my name is Joe”, making eye contact, and shaking the teacher’s hand. It also involves listening to the teacher introduce themselves, and answering a question or two if the teacher asks. Joe might also have questions about the class that can be answered then, but his parents must be familiar enough with his needs to help him know what to ask. Carol Gray’s Social Stories are a great resource for children learning to interact socially and role playing is often helpful.

5. Jumping on the latest thing instead of analyzing their child’s needs and finding the right tools to help them as an individual.

Sarah’s family is well educated and has the means to provide her with whatever she needs. They see many specialists and try every new thing that comes out to “fix” Sarah.

It is critical to really think about what you know about your child before selecting different treatment options. Each child is so different and certainly there will be some trial and error, but there are often clues/indicators of what will work best for a particular child. Parents often disregard their parental instincts because they have heard something worked for someone they know and the child got much better.

The families I see who have the most success seem to be the families who know their child’s strengths and needs and have found a combination of strategies that are a good match for their child.

3 comments:

Anonymous said...

The first one is interesting. At age 5, we were told our child was autistic. However, he talked fine with us, played, ran around and looked like a normal kid. He did have some hearing issues and needed ear tubes at age 6. We heard the same thing over the next two years and I noticed him having more troubles socially. I denied every bit of the schools "he is autistic" until I was blue in the face. I started showing up at school last year during recess just to see what my son was doing...Sure enough, he would find a spot in the middle of the playground and just sit there while all the other kids were running around him. I noticed he couldn't sit still anywhere else and would constantly stir at dinner tables, etc. I also noticed him being more combative as far as homework, etc. He would spend hours hiding in the bathroom. He had world classic tantrums over the smallest things. This year he was diagnosed Aspergers. He sees a private psychologist at least twice a month and is getting social skills help in the school. I do feel that I should have opened my eyes earlier to the issue but he was so communicative with the family, I just didn't see it. Now I do. Talk to your child's school and set up an evaluation or talk to a private psychologist. It's never too late to seek out help. It's never too late to help a child.

Sandra said...

In our case, it wasn't the parents that were the reason for the late diagnosis (at age 10). We started looking for help between 4 and 6 and got misdirected, misdiagnosed and blamed as "bad parents". By the time we finally got the diagnosis, things were already bad and we've had trouble trying to help her ever since :(

Sandy said...

Unfortunately the "bad parent" label is all too common. Even with a diagnosis at age 6 by the school system I am constantly being told the problem is my bad parenting by everyone except the school. I'm so discouraged that I now try to avoid any social situation where I have to take my son with me. All it takes is one mini-meltdown to bring the critics out of the woodwork.

My child has been rejected by his peers, ridiculed and bullied !!!

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