Overcoming the Challenges of Raising Kids with Asperger's and HFA

Tips for parents who recently learned their child has Aspergers or High-Functioning Autism:

There are many things moms and dads can do to help their kids with Aspergers and High-Functioning Autism (HFA) overcome their challenges and get the most of life. From learning all you can about autism spectrum disorders to getting your youngster into treatment right away, you can make a big difference.

It’s also important to make sure you get the support you need. When you’re looking after a youngster with Aspergers or HFA, taking care of yourself is not an act of selfishness—it’s a necessity. Being emotionally strong allows you to be the best mother or father you can be to your youngster in need.

If you've recently learned that your youngster has (or might have) the disorder, you're probably wondering and worrying about what comes next. No parent is ever prepared to hear that a youngster is anything other than happy and healthy, and a diagnosis of an autism spectrum disorder can be particularly frightening. You may be unsure about how to best help your youngster, or you may be confused by conflicting treatment advice. Also, you may have been told that the disorder is an incurable, lifelong condition, leaving you concerned that nothing you do will make a difference.

Unprepared moms and dads often have numerous questions about Aspergers and HFA once they have discovered it now affects their family. For example:

• How will my youngster learn best (e.g., through seeing, listening, or doing)?
• What are my youngster’s strengths?
• What are my youngster’s weaknesses?
• What behaviors are causing the most problems?
• What does my youngster enjoy and how can those activities be used in treatment?
• What important skills is my youngster lacking?

While it is true that the disorder is not something a person simply "grows out of," there are many treatments that can help kids learn new skills and overcome a wide variety of developmental challenges. From free government services to in-home behavioral therapy and school-based programs, assistance is available to meet your youngster's special needs. With the right treatment plan, and a lot of love and support, your youngster can learn, grow, and thrive.

As the parent of a youngster with Aspergers, HFA, or related developmental delays, the best thing you can do is to start treatment right away. Seek help as soon as you suspect something’s wrong. Don't wait to see if your youngster will catch up later or outgrow the problem. Don't even wait for an official diagnosis. The earlier kids on the autism spectrum get help, the greater their chance of treatment success. Early intervention is the most effective way to speed up your youngster's development and reduce the symptoms.

Tips for Parents—

1. Accept your youngster – quirks and all. Rather than focusing on how your youngster is different from other kids and what he or she is “missing,” practice acceptance. Enjoy your kid’s special quirks, celebrate small successes, and stop comparing your youngster to others. Feeling unconditionally loved and accepted will help your youngster more than anything else.

2. Become an expert on your youngster. Figure out what triggers your child's “bad” or disruptive behaviors and what elicits a positive response. What does he find stressful, calming, uncomfortable, and enjoyable? If you understand what affects your youngster, you’ll be better at troubleshooting problems and preventing situations that cause difficulties.

3. Don’t give up. It’s impossible to predict the course of the disorder. Don’t jump to conclusions about what life is going to be like for your youngster. Like everyone else, kids on the spectrum have an entire lifetime to grow and develop their abilities.

4. Learn about the disorder. The more you know about it, the better equipped you’ll be to make informed decisions for your child. Educate yourself about the treatment options, ask questions, and participate in all treatment decisions.

5. Provide structure and safety. Learning all you can about the disorder and getting involved in treatment will go a long way toward helping your youngster. Additionally, the following tips will make daily home life easier for both you and your youngster:

•    Stick to a schedule. Kids with an autism spectrum disorder tend to do best when they have a highly-structured schedule or routine. Again, this goes back to the consistency they both need and crave. Set up a schedule for your youngster, with regular times for meals, therapy, school, and bedtime. Try to keep disruptions to this routine to a minimum. If there is an unavoidable schedule change, prepare your youngster for it in advance.

•    Reward good behavior. Positive reinforcement can go a long way with kids on the spectrum, so make an effort to “catch them doing something good.” Praise them when they act appropriately or learn a new skill, being very specific about what behavior they’re being praised for. Also, look for other ways to reward them for good behavior, such as giving them a sticker or letting them play with a favorite toy.

•    Create a home safety zone. Carve out a private space in your home where your child can relax, feel secure, and be safe. This will involve organizing and setting boundaries in ways your youngster can understand. Visual cues can be helpful (e.g., colored tape marking areas that are off limits, labeling items in the house with pictures). You may also need to safety proof the house, particularly if your youngster is prone to tantrums or other self-injurious behaviors.

•    Be consistent. Kids with Aspergers and HFA have a hard time adapting what they’ve learned in one setting (e.g., the therapist’s office, school) to others, including the home. For example, your youngster may use sign language at school to communicate, but never think to do so at home. Creating consistency in your youngster’s environment is the best way to reinforce learning. Find out what your youngster’s therapists are doing and continue their techniques at home. Explore the possibility of having therapy take place in more than one place in order to encourage your child to transfer what he or she has learned from one environment to another. It’s also important to be consistent in the way you interact with your youngster and deal with challenging behaviors.

6. Find nonverbal ways to connect. Connecting with an Aspergers or HFA youngster can be challenging, but you don’t need to talk in order to communicate and bond. You communicate by the way you look at your youngster, the way you touch him or her, and by the tone of your voice and your body language. Your youngster is also communicating with you, even if he or she never speaks. You just need to learn the language.

•    Figure out the need behind the tantrum. It’s only natural to feel upset when you are misunderstood or ignored, and it’s no different for kids on the spectrum. When they act out, it’s often because you’re not picking up on their nonverbal cues. Throwing a tantrum is their way communicating their frustration and getting your attention.

•    Look for nonverbal cues. If you are observant and aware, you can learn to pick up on the nonverbal cues that kids with Aspergers and HFA use to communicate. Pay attention to the kinds of sounds they make, their facial expressions, and the gestures they use when they’re tired, hungry, or want something.

•    Make time for fun. A youngster coping with this disorder is still a kid. For both kids and their parents, there needs to be more to life than therapy. Schedule playtime when your youngster is most alert and awake. Figure out ways to have fun together by thinking about the things that make your youngster smile, laugh, and come out of their shell. Your youngster is likely to enjoy these activities most if they don’t seem therapeutic or educational. There are tremendous benefits that result from your enjoyment of your youngster’s company and from your youngster’s enjoyment of spending unpressured time with you.  Play is an essential part of learning and shouldn’t feel like work.

•    Pay attention to your youngster’s sensory sensitivities. Many kids on the spectrum are hypersensitive to light, sound, touch, taste, and smell. Others are “under-sensitive” to sensory stimuli. Figure out what sights, sounds, smells, movements, and tactile sensations trigger your child's “bad” or disruptive behaviors and what elicits a positive response. If you understand what affects your youngster, you’ll be better at troubleshooting problems, preventing situations that cause difficulties, and creating successful experiences.

7. Create a personalized treatment plan. With so many different treatments available, and it can be tough to figure out which approach is right for your youngster. Making things more complicated, you may hear different or even conflicting recommendations from moms and dads and docs. When putting together a treatment plan for your youngster, keep in mind that there is no single treatment that will work for everyone. Each person on the spectrum is unique, with different strengths and weaknesses.

Your youngster’s treatment should be tailored according to his or her individual needs. You know your youngster best, so it’s up to you to make sure those needs are being met. You can do that by asking yourself the following questions:

A good treatment plan will:

• Actively engage your youngster's attention in highly structured activities.
• Build on your youngster's interests.
• Involve the moms and dads.
• Offer a predictable schedule.
• Provide regular reinforcement of behavior.
• Teach tasks as a series of simple steps.

Keep in mind that no matter what treatment plan is chosen, your involvement is vital to success. You can help your youngster get the most out of treatment by working hand-in-hand with the treatment team and following through with the therapy at home.

When it comes to treatment, there are a dizzying variety of therapies and approaches. Some therapies focus on reducing problematic behaviors and building communication and social skills, while others deal with sensory integration problems, motor skills, emotional issues, and food sensitivities.

With so many choices, it is extremely important to do your research, talk to treatment experts, and ask questions. But keep in mind that you don't have to choose just one type of therapy. The goal of treatment should be to treat all of your youngster's symptoms and needs. This often requires a combined treatment approach that takes advantage of many different types of therapy.

Common treatments for Aspergers and HFA include behavior therapy, speech-language therapy, play-based therapy, physical therapy, occupational therapy, and nutritional therapy.

8. Find help and support. Caring for a youngster with Aspergers or HFA can demand a lot of energy and time. There may be days when you feel overwhelmed, stressed, or discouraged. Parenting isn’t ever easy, and raising a youngster with special needs is even more challenging. It’s essential that you take care of yourself in order to be the best parent you can be.

Don’t try to do everything on your own. You don’t have to! There are many places that families of "special needs" children can turn to for advice, a helping hand, advocacy, and support:

•    Respite care – Every parent needs a break now and again. And for moms and dads coping with the added stress of an autism spectrum disorder, this is especially true. In respite care, another caregiver takes over temporarily, giving you a break for a few hours, days, or even weeks. To find respite care options in your area, see the box to the right.

•    Individual, marital, or family counseling – If stress, anxiety, or depression is getting to you, you may want to see a therapist of your own. Therapy is a safe place where you can talk honestly about everything you’re feeling—the good, the bad, and the ugly. Marriage or family therapy can also help you work out problems that the challenges of life with an Aspergers or HFA youngster are causing in your spousal relationship or with other family members.

•    Support groups – Joining a support group is a great way to meet other families dealing with the same challenges you are. Moms and dads can share information, get advice, and lean on each other for emotional support. Just being around others who are in the same boat and sharing their experience can go a long way toward reducing the isolation many moms and dads feel after receiving a youngster’s diagnosis.

9. Know your youngster’s rights. As the parent of an Autistic youngster, you have a legal right to:

• Be involved in developing your youngster’s IEP from start to finish.
• Disagree with the school system’s recommendations.
• Free or low-cost legal representation if you can’t come to an agreement with the school.
• Invite anyone you want—from a relative to your youngster’s doctor—to be on the IEP team.
• Request an IEP meeting at any time if you feel your youngster’s needs are not being met.
• Seek an outside evaluation for your youngster.

10. Consider yourself a member of a very elite and interesting group of parents. Many leading figures in the fields of science, politics and the arts have achieved success because they had an autism spectrum disorder. Some of the characteristics linked to the disorder are the same as those associated with creative genius. One of the reasons for this could be the fact that the disorder creates people who are able to persist with one idea for huge periods of time - while those without the disorder would have long since moved on to another area of thought.


Explaining Asperger's or High-Functioning Autism to Your Recently Diagnosed Child 

In keeping with this positive mind-set, please share the following message with your child or teenager:

There are aspects of Asperger and HFA that you can use to your great advantage. For example:

1. 3-Dimensional Thinking: Your ability to utilize 3-dimensional visioning gives you a unique perspective when designing and creating solutions.

2. Attention to Detail: Your ability to remember and process minute details without getting lost or overwhelmed gives you a distinct advantage when solving complex problems.

3. Cutting through the Smoke Screen: Your ability to recognize and speak the truth that is being "conveniently" ignored by others can be vital to the success of a project or endeavor.

4. Focus: Your ability to focus on one objective over long periods of time without becoming distracted allows you to accomplish large and challenging tasks.

5. Independent Thinking: Your willingness to consider unpopular or unusual possibilities generates new options and opportunities and can pave the way for others.

6. Internal Motivation: Rather than being swayed by social convention, other's opinions, social pressure or fears, you can hold firm to your own purpose. Your unique ideas can thrive, despite naysayers.

7. Logical Decision Making: Your ability to make logical and rational decisions and stick to your course of action without being swayed by impulse or emotional reactions allows you to navigate successfully through difficult situations without being pulled off-course.

8. Unique Global Insights: Your ability to find novel connections among multidisciplinary facts and ideas allows you to create new, coherent, and meaningful insight that others would not have reached without you.

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

==> Preventing Meltdowns and Tantrums in Asperger's Children

==> Discipline for Defiant Asperger's Teens

==> Teaching Social Skills and Emotion Management

==> Parenting Children and Teens with High-Functioning Autism

==> AudioBook: Unraveling The Mystery Behind Asperger’s and High-Functioning Autism

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


COMMENTS:

•    Anonymous said...  Hugs to all you parents out there doing it rough. I am so glad my son has not been as severe with his symptoms of Aspergers. My heart aches for those of you struggling. Hang in there.
•    Anonymous said...  I have had the same situation as the first commenter. I think that my Aspie son is not as extreme as he could be due to my management and him being homeschooled his whole life. Thankfully by the time I told his psychologist all the things he did when little he was able to see that my son is Aspie even if he doesn't show the usual symptoms of a 13 year old Aspie. I hope the first commenter is able to get help if it is needed.
•    Anonymous said...  I loved reading this, I even passed it on to my aunt and husband. Now if I can just get the doctors to agree that my 13 is in fact an Aspie. Any advice on that one?? They said, oh no, I dont see that at all. I'm begining to think I managed well enough with him over the years to mask some of his presence with others.
•    Anonymous said...  I really enjoyed reading this article. My seven year old son was just diagnosed with high functioning Aspergers/ADHD/anxiety. Unfortunately, my ex-husband (his dad) doesn't agree with the doctor or me because he doesn't act the same way at his house. Al they do there is play video games, which is what my son does when he "zones out" and needs to remove himself from all situations. When he comes home after being there, he usually a mess and has meltdown after meltdown. He goes to his dad's every other weekend. His dad also tortures him by making him do stuff that he knows will both him, like go to the movie theater. My aspie is terrified of the movie theater, and hides under his blankie the whole time he is there, and then his dad makes fun of him and calls him a "baby" and a "wimp." Any one got any suggestions? I also have six other kids that live full time with me (18, 16, 12, 9, 6, & 2) and I have a 7 year old step son that comes every other weekend (the weekend when my kids are home with me, so that make 8 kids at home that weekend).
•    Anonymous said... I have a twenty year old daughter that has never been diagnosed with Asperger’s Syndrome. However, after recently learning more about this disorder, I think she could very possibly have it. Some of the things that I see are as follows: poor personal hygiene doesn’t brush her teeth, wash her hair or take a bath without being reminded, doesn’t like change –never cuts her hair, sits at the same seat at table, wears the same clothes over and over, is a homebody-very few friends gets hung up on one thing and that’s all she wants to talk about has an extreme sense of smell. We are so frustrated with her. I am constantly getting after her, but it does no good. She feels like she is a victim. We took her to family counseling for a while, but It did no good. I don’t know what to do or where to go for help? I would like to have her tested, but I don’t know how to go about telling her or where to go? If you have any advise, it would greatly be appreciated.
•    Anonymous said... My 6 year old son has never been formally diagnosed with Aspergers but his class teachers agree with me, that he is definitely on the spectrum. He causes no problems at school - he knows how he should behave and the boundaries. He has meltdowns at home but the last few days have been exceptionally hard for me to cope with. He has been telling us that he is rubbish and ugly and we should kill him as he is no good. The worse thing, he means it, you can see it in his eyes. I want to get help for him, but my husband is reluctant- he thinks social services will be involved and doesn't want this to happen.
•    Anonymous said... My son did the same thing when he was about 4... His father said there was nothing wrong with him and refused to believe so... I went on my own to therapy apts, and joined a group that supported special needs. That was the best thing I ever did and his father now thanks me for it... At age 3 I knew something was wrong and the older he got the worse he was. So by age 4 I had to do something. Now he is 7 and you would hardly know he has aspergers. Many years of therapy and unconditional love and support helped me get thru the tough times. He is still in "group" and he has an attendent care person at school during certain transitions that upset him. He still has moments of where he mumbles stuff like your son but its much better now. Just because he has a disorder doesnt mean anything is wrong it just makes them more special. Social Services wouldn't be involved at all. You are just a parent worried about you child. My suggestion is to have your husband and son go to therapy. You really learn alot about how they feel and what you guys can do to help him. Hope this gives you some hope.
•    Anonymous said... My son is 13yrs has Aspergers/ADHD. He has been to three primary schools and now he does corresponds at home. He has learned that us his parents will rescue him from his behaviors as we have done when he was in the school system. He is not violent but manipulative, especially in public where if we try to discipline him he will say we are abusing him. He use to watch TV and act out what he saw believing this was how people acted from programmers such as The Simpsons and Family Guy, which we have banned him from watching. Now he acts like a sheep that he sees from our house and he will smile and bunt us. He has started doing this in public and talking to the sheep in public too. When he goes somewhere he doesn't want to be such on a day trip with Autism NZ holiday programmed he plays up and uses bad language, defiant, yells out to the public saying they are hurting him. He went for a test to see where he was with his learning and afterwards he acted like a mating sheep and used bad language. Please help me with some ideas. We got into a lot of trouble when he was in school as he would make things up and people believed him and now he is a teen I am worried where he is heading.
•    Anonymous said... My son is almost 14. He has been taking medication since he was 7 for a mood disorder - not otherwise specified. He has also been diagnosed with general anxiety disorder - not otherwise specified and OCD. He is about 75 pounds overweight due to the meds he has been on. He has extreme school anxiety....and he is cyclical. Falls into a terrible depression at the end of February and we typically increase his meds and he is ok til May. Then he dips down again. Last year, he did not get better until he tried to commit suicide in October. He is currently in 7th grade and a full time aide must follow him to direct his every move in regard to school work. He was in a partial hospitalization program in 5th grade because he refused to go to school. In sixth grade, he never went back after Memorial Day. This year (7th grade), he has not missed a day, but I think that it is because he has the aide. Next year, he will be in 8th grade. On a typical morning, I have to physically remove him from his bed and I never know if he is going to go or not. He has behavioral therapy twice a week for two hours a day. He cries any time he does not get his way. Very easily frustrated.
•    Anonymous said... The mention of 3-Dimensional Thinking is such a familiar concept. My 7 year old son was diagnosed with High Functioning Asperger's two months ago. I have said, for YEARS, that he speaks in three dimensions. He has always described events and scenes in mind-blowing detail, and that was the only way I could describe it. While there are certainly downsides to being on the spectrum, some of the characteristics are amazingly wonderful.
•    Anonymous said... you need to get the school to investigate him and do a CAF form do they have a SENCO? mine was fabulous, once he is diagnosed they will understand and assist him, its not a "label" its just a difference, a paeditrician can diagnose him as well x

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