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Stephen's Story: Parents Share Their "Aspergers" Experience

While we are a bit sad about our son Stephen's diagnosis of Aspergers, we are also actually somewhat happy to find out. Finally, we have direction and some understanding!

Just like you read about kids with Aspergers or PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified), Stephen has a lot of idiosyncracies, practices, attitudes, etc. that get him in trouble and teased and ridiculed.

He's also very sad at times, very depressed to the point of talking about suicide at least every other day.

We had problems with him being attacked at school, over and over again, and after much screaming and threats of lawsuit over the lack of safety contributing to Stephen being repeatedly assaulted we were finally granted a meeting with the Director of Pupil Services, the District Psychologist and the Principal and Vice Principal of the school.

After reciting Stephen's history to the District Psychologist she then asked us if anyone had ever mentioned Aspergers in regards to Stephen's difficulties.

As soon as that meeting was over and we got home I started researching Aspergers online and it wasn't long before I was convinced that this is what Stephen has been dealing with all this time.

I downloaded information from online, highlighted sections and made notes that were specific to Stephen's issues and scheduled a couple appointments, one with a psychiatrist (med doctor) and one with a particular psychologist whom Stephen is familiar with and connects with.

Our suspicions were confirmed and Stephen was officially diagnosed with Aspergers in November 2005.

After his diagnosis, his depression subsided quite substantially. I think it's because of a few reasons...

1. I think our son somewhat realizes that we understand him better and sees that we are fighting for him to make life in school smoother for him.

2. The psychiatrist that he has started seeing (he was seeing just a behavioral doctor for behavioral issues) has changed his medication, he eliminated the Risperdal and put him on Prozac.

3. We are able to understand him better and we now realize that he's not necessarily purposely breaking rules, not necessarily purposely hurting feelings and not necessarily purposely 'bugging' people and because of this new-found understanding we are working with him differently now.

4. Mark Hutten’s eBook entitled My Aspergers Child has given us the tools to deal with Stephen’s meltdowns. We had no idea what to do about these intense temper tantrums before. But the information in the eBook and videos has made a tremendous difference in how we react to our son, which in turn has made a big difference in how our son reacts to us – his parents. There is much less tension in our home now, which gives everyone more energy to focus on the really important things.

Building Self-Esteem in Children with Autism Spectrum Disorder

"How can I help my very depressed 13 y.o. lad to develop some self-esteem? He feels like nobody NOBODY likes him right now :(  Is this common for children on the autism spectrum? Would it have anything to do with puberty?"

Youngsters with ASD can oftentimes FEEL that they are different. This can affect his/her self-esteem. As a parent, this can break your heart. 

Here are some ideas to help your youngster to build up his self-esteem again:

Kids with ASD have a much harder time with their self-esteem. They often perceive the constant correction of their behaviors and their social interactions as criticism. The frequent visits to doctors, or speech therapists, or OTs, the testing and the stream of interventions that we try with them can easily leave them feeling like they're under the microscope, a specimen that warrants investigation, a person who needs fixing.

Expressive and comprehensive communication has a direct impact on a youngster's self-esteem. These are areas that do not come easily to kids or adults with ASD. Understanding subtle jokes and participating in human interplay, actions natural to their neuro-typical peers, further increase their feelings of 'not fitting in' and erode their self-esteem. Combine all this with the expectations of siblings and the all-too-frequent bullying interactions from many peers and it's easy to understand how devastated a youngster with ASD can feel.

What can we do? It's critical for us, as family members, educators, and professionals to learn strategies and techniques! In our not-too-distant past, institutional placement was the standard intervention for people with ASD. While that is not the case today, we still encounter lack of understanding and appreciation for the unique qualities of the person with ASD. Everyone, especially these visual learners, need a constant reminder of how special they truly are. We must find ways to give them their own Teddy Bear (or dinosaur!) so they will feel "L.C.B." on their own.

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism
 
But how do we really build their self-esteem? It starts with us examining our own ideas of how we view kids with ASD. We must believe in their value ourselves before we can ever change their minds. These kids know when we're faking our compliments or arbitrarily handing out encouragement because the therapy book says we should give 5 positive comments to each correction. It involves empathy, walking in their shoes, rather than sympathy; no one wants to be felt sorry for. Each youngster is a gift, with his or her own special qualities. We just need to look for these special gifts, tune into the youngster with our hearts, and bring their essence out.

Knowledge is power and nowhere is it more powerful than in helping people better understand what it's like to have ASD. Explain the disorder to everyone involved with the youngster. This will increase their empathy and provide opportunities for genuine praise and encouragement. Explain ASD to the youngster, too, when he is able to understand his disability. Who are we really kidding, other than ourselves, when we pretend a youngster does not have the "label" or we try to camouflage it? Who are we hurting? It's the youngster with ASD who is hurt in the long run.

Go to conferences, read books, research and share information that takes into consideration the many sensory, social, behavioral and communication challenges faced by the youngster at his/her functioning level. Armed with this understanding of how the disability affects the youngster, you and others can better find ways to help him or her fit in.

Remember to teach extended family, educators, other parents and professionals all you can to help integration and provide a deeper understanding when trying to teach particular skills. Be intuitive when advocating for kids and persistent in your approach, though not abrasive. Having a positive mental attitude, especially when advocating, helps others want to cooperate with us. After all, who wants to deal with anyone cranky?

Bridge the interactions between peers and the youngster with ASD. Visually and verbally interpret what you think they both are thinking and/or feeling based on your own experiences when you were their age, and your understanding of ASD.

By teaching others about ASD, more people will become aware of this invisible disability. When people understand empathetically, they will more naturally accept the youngster with ASD, as he is. This is often effective in reducing or eliminating bullying from peers, too.

Learn to correct behaviors by sandwiching the correction in the middle of positive feedback. For example, "Sammy, you are doing a great job cleaning your room. If you pick up the clothes over there it would look even neater. Boy, you sure are a good
listener."

Kids with ASD often times have an incredible sense of humor. I have to stop myself from laughing so my own son doesn't feel like I'm laughing "at" him, causing him to feel inadequate. Sometimes I'll even say "I'm not laughing at you, Jonny, I'm laughing with you."

Stress the positives! Look for the good in every youngster, even if you don't see it at first. Pretending to be Pollyanna can only help, but make sure you're genuine in what you say. Stress the good effort your youngster is making, if he hasn't yet achieved a goal. Show your confidence in his abilities by telling him that you believe he can succeed. Saying things like this that may not be 100% true initially will contribute to your youngster's trust and belief in himself, raising his self-esteem and encouraging self-motivation to continue trying.

Model a mental attitude of "things are great". Express yourself in the positive, rather than the negative. Kids with ASD are masters at copying what others say, so make sure they're hearing things that are good for them to copy! When we say, "You are great!" to a youngster often enough, he, too, will believe it and feel valued for who he truly is.

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism
 
Encourage kids to share their thoughts and feelings; this is so important and often sheds new light on existing situations. My son, Albert was temporarily removed from the bus after cutting the seat. At first we thought he was acting out, so we had him write an apology to his bus driver. When we read his letter, we discovered that he was being bullied by another student on the bus and that it had been going on for quite some time. We intervened appropriately. The other youngster was reprimanded and Jonny was taught appropriate methods of expressing his anger in the future.

Like most people, kids with ASD feel better about themselves when they're balanced physically, emotionally, and spiritually. Since they are often very picky eaters and gravitate towards junk food, it's important to try supplementing their diet. Also, provide regular physical activity, when possible, to relieve stress and clear their mind.

Set the stage for success by acknowledging their achievements - however small - and reminding them of their past accomplishments. Keep their life manageable and doable, refraining from overwhelming them with so many activities that they become too challenged physically and mentally to succeed at anything. Provide choices to them frequently so they understand they have a say in their own lives and even let them be in charge sometimes. These are all great ways to build self-esteem!

Don't overlook giving them opportunities to connect with their spiritual side through religious avenues or by communing with nature. This can help them feel purposeful, that their lives have meaning and connected with their source.

A strategy that helped raise Albert's self-esteem, especially in overcoming his victim thoughts and feelings, was spiritual affirmations. Using affirmations took some time, but we found that it brought calm and peace to Albert and our family.

Dr. Jerry Jampolsky, author of Love is Letting Go Of Fear and founder of the Center for Attitudinal Healing, offers many principles I find helpful in teaching us to love ourselves, thereby enhancing self-esteem, both in ourselves and then with others. Some of his principles include:
  • Become love finders rather than fault finders
  • Health is inner peace
  • Learn to love others and ourselves by forgiving rather than judging
  • Live in the now
  • The essence of our being is love
  • We can choose to be peaceful inside regardless of what's going on outside
  • We're all students and teachers to each other

Part of Jerry's message is that by focusing on life as a whole, rather than in fragments, we can see what is truly important. His concepts, when embraced, positively affect how a youngster with ASD thinks and feels about him or herself. Anger, resentment, judgment and similar feelings are all forms of fear. Since love and fear cannot co-exist, letting go of fear allows love to be the dominant feeling.

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism
 
Look for the Miracles Daily, there are miracles and good things happening all around us. Learn intimately the challenges that kids with ASD face in their everyday lives. Be on their team by tuning into who they truly are - unique expressions of divine light. Empower them to be themselves, perfectly okay with who and how they are.

Do this by loving them for who they are now, today, not who you think they should become, after ABA, or speech therapy or learning 'appropriate' social skills. Consider that kids and adults with ASD are wonderful beings here to teach us empathy, compassion, understanding and most importantly, how to love. Most importantly, do whatever it takes to include them in life rather than merely integrate their presence.

In genuine star sapphires there are tiny imperfections and inclusions that reflect light perfectly to form a star in the stone. Each youngster with ASD is like this precious gem, unique in every way. Without the tiny inclusions, there would be no star. It is our job as parents, educators and professionals to "bring out the stars" in all of our special kids by shining the light on their natural beauty. In so doing, we see their different abilities rather than their disabilities. And, then they will see them, too.

==> Here's more information on how to build your child's self-esteem and to capitalize on his/her strengths...
 

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book


==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism


 

COMMENTS:

•    Anonymous said… And that's why we've stopped the social skills groups. Can you imagine being made to work on your worst skill and being constantly scrutinized for it on every turn? Now we do playdates with kids who have similar interests as my son, and he's doing so much better!!!
•    Anonymous said… As an ASPIE aka Aspergers person, my self esteem is put on LOW by those who think everybody should be flawless.
•    Anonymous said… My daughter came to me at a very young age (way before I suspected AS) and told me "I can't do anything right"... young enough that I wouldn't have thought a child would normally be analyzing such things. It made me so sad. I think she actually did pretty good homeschooling, then I put her in public school which is what brought her AS to my attention. It's been a struggle every since and she is not open to counseling or help.
•    Anonymous said… My daughter, who also has severe anxiety, attends a therapeutic high school, which has been great. She has daily in-school counseling and an outside psychiatrist (who she really doesn't have a relationship with). However, she refuses to see an outside counselor (the last one made her cry every time). We tried s social skills group and that didn't work either. Suggestions?
•    Anonymous said… Our social group doesn't focus like that, it is a "community based group", meaning all of the meetings take place in businesses around town: Starbucks, ice skating, a restaurant etc. There are themes the facilitator has in mind to work on, but if another challenge comes into play they work on that. See if you can't get into or create one of those types of groups with the therapy team in your area.
•    Anonymous said… We've been treading very carefully with therapies since our then 7 now 10 ds said he was dumb, stupid, not good at anything and thought he should die....such a fine line between providing good therapeutic support where needed and not making him feel like he's broken and needs fixing.

Post your comment below…

Should my ASD teenager get a job?

If you have the perfect situation and your ASD (high functioning autistic) teenager is excited about the opportunity, then go for it. You know your youngster better than anyone, and many ASD teenagers can do very well working for others. 
 
However, if you are uneasy about sending your teenager off to a job, then consider the possibility of starting a home business with him. You and your teenager can work together. You can help him learn about responsibility, customer service, sales, marketing and book keeping.

Here are some business ideas to consider:

1. Elderly care. Stop by once a day, to bring in their paper, take out their garbage, and check in.

2. Pet Sitting or Grooming. If your teenager loves animals (and doesn’t have allergies), pet sitting can be the perfect way for your teenager to make money and build self-esteem in the process. The only critical thing here is that you have to make sure they are meeting their appointments. Depending on your teenager’s level of responsibility, you may be driving and, possibly going with them. An alternative, of course, is to bring the pet to your home, if that’s an option.

3. Pooper scooper. Yes, you read that right. Yards get messy. People are busy. It’s a perfect fit. It’s not the most pleasant work, but, it is work that you can do on your own schedule. It’s flexible and it pays well.

4. Yard work. Raking, weeding, spreading mulch. All of these things can pay quite well for an ASD teenager. In fact, your teenager could easily make more money per hour than many of his classmates who have regular hourly jobs.

These are just a few of the many ways you and your teenager can build a business together. Please, if your teenager cannot function in a fast paced job like McDonalds or a Movie Theater, then don’t force it. There are ways to help your youngster to learn the skills needed to become an entrepreneur instead.

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

Should my Aspergers child participate in sports?

If your Aspergers (high functioning autistic) youngster is having difficulties socially in school, you may be tempted to sign him up for basketball or soccer with the other youngsters. You know your youngster better than anyone. Just be sure that you’re setting your youngster up for a positive, rather than a negative experience. Make sure you know who will be coaching your youngster, and make sure that he is someone who you want in charge of your youngster’s self-esteem for the next few months. Make sure your coach is a “good guy.” If the coach has any insight into Aspergers, even better!

However, if team sports are not your youngster’s strong suit and he or she gets very stressed or has that “lost” look while participating, then here are some alternatives:
  • Bike Riding (go on bike trails if you are concerned about safety)
  • Camping as a family
  • Going on Long Walks with You
  • Going to the Park (just being a kid!)
  • Karate (again, make sure the people in charge of the facility are warm, loving, patient people, before signing on the dotted line)
  • Playing Tag
  • Swimming

Each of these activities will help strengthen your youngster physically and give him the benefits of self-confidence as well.

All youngsters need to be physically active, but at what cost? Surely not at the cost of losing self-esteem. Sports are supposed to build you up, not tear you down.

And, of course, another option would be to send your youngster to a camp for Aspergers so he is trained, coached AND encouraged by people familiar with the special needs of your youngster.


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