Caring for a Child with Autism Spectrum Disorder: Asperger Syndrome
Advice for families and caregivers
What are some characteristics of people with Asperger syndrome?
What are some strengths of people with AS?
What can I do if I'm depressed and having difficulty accepting that I have a child with autism?
Where can I find support groups for people in my situation?
What are the best ways to parent a child with AS?
How can I best function as an advocate for my child?
What kinds of Early Intervention Services can I expect for my child with AS?
What are the treatment goals for a child with AS?
What's a typical day for a child with Asperger syndrome?
How does having a child with AS affect family life?
Will my child have friends?
Can I do anything to help my child be less socially isolated?
How can I help my child get through the painful middle school years?
How should my son handle his auditory processing disorders during conversations?
My son believes he'll always be a 'loser.' How can I help?
Will my son with AS ever be able to get a job?
Will my child be able to live independently?
How can I find someone to care for my child with Asperger syndrome?
- Grieve the loss of the child you expected or dreamed about and begin to develop new dreams for the child you have.
- Recognize your child's strengths, as well as his limitations.
- Educate yourself about your child's condition.
- Focus on helping your child to be "the best he can be." Avoid comparing your child with others.
- Seek help -- with emotional issues, finding a caring health care provider, and creating an educational program that meets your child's needs.
- In addition to health care professionals and various therapists, other parents in your situation may be wonderful resources, providing support through one-on-one relationships or support groups, as well as through written personal stories about their adjustments and coping strategies.
Autism is all around you. A few of the many organizations offering support, information and connection to others in your situation, in addition to local social service organizations, include: Autism Speaks, the Autism Society of America, and Autismlink.
Other options are to attend conferences and lectures, and to join the local special education political action committee. This way you can meet and befriend other parents who have children with autism, and form your own more intimate support group.
- Educate yourself. Talk to other parents. Read the literature. Consult specialists.
- Get as much help as you can, as soon as you can. Early Intervention can give your child the best chance of fulfilling their potential.
- Once you begin an Early Intervention program, your child will receive a great deal of therapy. It is essential to implement the same therapy at home, to provide your child with consistency and to teach that the learned behaviors must be utilized everywhere.
- Find objective measurements to determine if your child is really making progress and learning. This is crucial as you must intervene immediately if a therapy is not working and substitute one that is effective with your child.
- Creating a daily schedule that your child can count on will also be helpful. Have regular times for therapy, school, meals and bedtime. If you must change the schedule, alert your child to this change in advance, so that he will be able to adjust.
- Motivation is powerful. Rewarding good behavior can reinforce it. In order to effectively use motivation to change behavior, the appropriate reward has to be constantly varied, analyzed, and adjusted. Praise every new skill, no matter how small it may be.
- Carve out a safe space where your child can relax, and feel secure. Visual cues that your child can identify will help, such as using colored tape to mark areas that are off limits. If your child has tantrums or injures herself, be sure to safety-proof your house.
- Find respite care. Due to the additional care needed by children with autism, respite care is considered a basic need for their families and will help preserve family stability. Families that have children with autism and utilize respite care report less stress than those who don't. You can search for a respite caregiver on Care.com.
If your child has been diagnosed with a special need, then your child is considered disabled and eligible for Early Intervention services from when you child is born up until the age of 3, and then Special Education from the age of 3 to 22 in the "least restrictive environment." This act also states that parents are entitled to be treated as equal partners in formulating an educational plan that meets their child's needs.
In order to be an effective advocate for your child, you will need to be familiar with the law, both on a national and state level, so that you know your rights. You will also need to be informed about your child's disability and what treatments are most effective. It will help if you have an idea of what specific interventions you have observed are most helpful for your specific child.
To support your advocacy, you will need to closely observe your child and keep detailed notes, citing specific interventions and the conditions that occurred at the time of those interventions, which interventions resulted in which positive results, and which seemed to be counterproductive because of certain results. Carefully evaluate whether or not a new intervention is successful, giving precise reasons for your conclusions, and make sure a more effective intervention is substituted.
Once your child turns 3, you will meet once a year with representatives of the school department to collaboratively work out an Individualized Education Program (IEP) for your child. In order to successfully advocate for your child, you will have to be assertive. If your child will be mainstreamed in a public school classroom, the assistance of a one-on-one aide may be required, or perhaps other special accommodations will need to be made. If an aide is provided, this aide should have been trained and educated in autism.
Early Intervention teams, along with you, the parents, develop an Individual Family Service Plan (IFSP) that is based on a comprehensive evaluation of your child. This written document describes your child's current levels of functioning, outcomes expected (goals) and specifies specific services that will be provided to meet the needs of your child and your family. It is helpful to prepare for the meeting at which an IFSP is worked out. In fact, some people recommend having a preliminary meeting with your services coordinator before the formal meeting.
- Address the three main areas of problems (poor communication skills, obsessive/repetitive habits, and social skills)
- Start when your child is as young as possible
- Build on your child's skills
- Have a predictable schedule
- Break down material into simple steps
- Actively engage your child's attention
- Reinforce good behavior
- Be as intensive as possible
The therapy should offer:
- Training in social skills
- Cognitive behavioral therapy to address anxiety and lack of emotional control, as well as to help a child limit obsessive interests and repetitive behaviors
- Medication to handle ADD, depression and/or anxiety
- Occupational therapy for children with sensory integration disorder
- Physical therapy for children with poor motor coordination, or alternative therapies such as hippotherapy or martial arts training to help with coordination
- Specialized speech and language therapy to teach how to have a two-way conversation
- Training and support for parents to teach how to apply behavioral therapy at home
- We need to wake our son up 45 minutes before his wake up time to give him oral meds for ADHD issues so he is manageable when he gets up. He is hyper, impulsive, and overwhelming loud. This medication calms that to a small degree. He needs reminders while getting dressed and help with getting his hair combed. He is 11.
- He then has his breakfast and takes another longer acting stimulant medication that will last him throughout the school day and up until 4:30-5:00 to control impulsive behavior, help him with focus, and calm his hyperactivity.
- He boards a van to go to school. A school bus proved to be too loud, and overwhelming for him.
- At school he is met by a personal assistant who stays with him his entire school day to help him stay focused, complete his work, interpret things he doesn't quite understand, and support him through anxious times.
- He comes home from school and I look at his homework assignments. We do homework right away -- in particular, the written homework. He only has so long that his medication is in his system for him to focus clearly enough to complete his work. We choose not to give him additional medication for afternoon-evening time unless he would have an evening activity. The medication makes it difficult for him to wind down and get to sleep.
- Homework is still a challenge. He hates math and the algebra problems he has been assigned this year. He loves the creative projects and does well on them. Studying for tests or quizzes is a waste of time. Homework takes 1 hour to 1 ˝ hours.
- Nights that his homework is light we take time to talk about social situations, his behavior, ways to handle situations at school, his feelings, etc. This is constant teaching for him. We review things like this every day.
- He then has free time the rest of the evening. He will play with his sister; they love to play Legos together. He likes to jump on the trampoline and ride his bike.
- Dinner time he is usually "grouchy" or even hostile. He doesn't like to eat. He doesn't like the smells of food. He has a pretty limited diet and when we eat something else, he can be easily grossed out by it. Regardless, he is expected to sit at the table, he is expected to come to the table calmly, and if he doesn't he must leave and come back the correct way.
- After dinner he helps clean up, sometimes. Nothing on a regular basis. He plays computer--he loves Google Sketch Up, or downloading music files (video game music) mostly onto Windows media player. He loves to listen to this music. We will then go into an evening routine-bath, etc. He will get ready for bed and play Nintendo DS then read. That is a pretty basic day.
Another mother of a 6-year-old with AS said they keep their son's tantrums "to a minimum" with therapy to address anxiety, attendance at a social skills club, weekly parenting sessions, and adherence to a gluten free, casein free diet intervention.
Here's what one mother of an 11-year-old boy with AS said:
"His issues affect our family life usually when his anxieties or fears come into play. We went to a Halloween party and he spent all night upstairs because someone was dressed as a bloody doctor. The fake blood freaked him out.
When he becomes upset over something, he can yell, scream, or just hide. This odd behavior embarrasses his sister. When we go away or out to eat, she always feels people are looking at him. And they are not. She is very self-conscious. She loves her brother, and interacts beautifully with him, but when others are around, she is very embarrassed of him. She is 9.
We limit ourselves on the activities we do as a family. We don't go to the movies usually. We would not go to an amusement park like Disney because of his fear of dressed up characters. But we do go hiking and spend time with family. We like to find ways to get out and enjoy the community yet keep him protected from the things that scare him.
Over time he has gotten better. His anxieties have lessened and how he reacts to anxious moments has gotten a whole lot better, overall. We try not to seclude him, but expose him to things with a protective net--so to speak. It takes planning and thought when we go out.
We realize the difference when we just take our daughters. The trips we take are so much easier, we are not on edge wondering what he will say or do.
Things are better, but they are still a challenge."
We invited kids from his class to his 11th birthday and nine kids came. He did great--played with them, played games, was a real comic--liked being the center of attention. The kids were great kids, too.
He is not sad about it. He knows he has AS, feels the difference, but it doesn't upset him to any great degree.
He plays well with his sister--to watch the two of them play one would never know that he has an autism related disorder. But he is so comfortable with her all of the edginess goes away."
- Encourage her to develop her strengths and interests.
- Have her participate in clubs related to her outside interests. If no clubs exist, suggest that she start one or join a group outside of school.
- Perhaps she can befriend the teacher of a subject she particularly enjoys, who might bolster her self-esteem.
- If there are trouble spots, such as the lunch room, find ways around them.
- Join a support group