Caring for a Child with Mid-level Autism

Autism is a complex disorder that interferes with a person's ability to communicate with and relate to others. Approximately one in every 166 people has it, and four out of every five are boys. There is great variability on the autism spectrum, ranging from the mildly affected who can be gifted and extremely competent to those who are nonverbal and isolated, caught up in self-stimulating behaviors. Typical symptoms include lack of sustained eye contact, trouble reading social cues, being prone to repetitive behaviors, and being overly sensitive to sensory input.

It's normal to go through a painful period of adjustment upon learning that your child has a special need. Here are some guidelines that may be helpful:

• Grieve the loss of the child you expected and begin to develop new dreams for the child you have.
• Recognize your child's strengths, as well as his limitations.
• Focus on helping your child to be "the best he can be." Avoid comparing your child with others.
• Educate yourself about your child's condition.
• Seek help -- for 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, including Autism Speaks, the Autism Society of America, and Autismlink.

You can also attend conferences and lectures, and join the local special education political action committee. This way you can meet and befriend other parents who have children with autism, get together, and form your own small and more intimate support group.

Here are two perspectives:

A mother's perspective:

"The child with autism sucks up your physical, financial, and emotional resources, leaving little left for the rest of the family. You invest your time, financial, physical and emotional resources and don't get that much in return. It takes an enormous emotional toll for the rest of your life, yet brings very little joy.

A sibling's perspective: When Danielle Chelminsky was 16, she wrote:

"I hated that my brother's needs came first and he got more attention than I did. 'I wish I had autism so you would play with ME for a change!' I would think. I thought my parents loved my brother more than me. I resented him, and blocked him out of my life. I was closeted about him since I thought his disability made my friends judge me. I hated being his sister."

 

However, life with a child with autism has some benefits and can provide profound insight. At the age of 16, Danielle Chelminsky wrote,

"My brother will never go to college or have his own family -- things that we consider to be normal. Yet who is to say 'normal' people are necessarily happy? He, on the other hand, is. Being a simple-minded kid, simple things make him happy. He likes Chinese food, swimming and playing the recorder. No one knows exactly what he is thinking, yet the smile on his face while dancing at his bar mitzvah makes me wonder if he is the one who is normal and we aren't. We make our lives so complicated; we take for granted what we have. Why don't little things make me a happy as they do for him? Maybe my brother isn't a complete tragedy. Maybe he was put in our family to teach me something about myself."

Parents of children who have autism learn quickly that public outings need to be planned for and that the child has to be prepared for what to expect, step by step. Doing so can turn a traumatic experience into a manageable one. Nevertheless, parents need to be prepared for disapproval from members of the public who don't understand their situation.

When caring for a child with autism, it helps to be proactive.

• Be prepared -- many kids with autism wander away. Introduce yourself and your child to the neighbors and police. Explain that your child has autism and that if they ever see him alone, they should contact you immediately. This will prevent many problems.
• Water attracts people with autism, and drowning is their number one cause of death, so it is important to take extra precautions whenever your child is near water.
• Have your child wear an identification tag with name, address and phone information in case he ever gets lost.
• Have a current photo of your child on hand to distribute in case he disappears, along with a list of identifying characteristics or behaviors that may attract attention.
• Have a list of suggestions on how to approach your child without causing undue alarm when he's found alone.
• Distribute a handout with all relevant information to any caregivers.

You will need to tell the caregiver what to expect:

• Respite caregivers should be familiar with autism, the specific autism traits that your child has, and the specific things your child likes and dislikes.
• Since most families of kids with autism incorporate Applied Behavior Analysis (ABA) with their children, respite caregivers need to be familiar with it in order to provide a consistent structure.
• Clarify your child's routines and daily schedule so that respite caregivers can adhere to it during the care.
• Explain how best to communicate with your child.
• Clarify what strategies work best with your child.

The Individuals with Disabilities Education Act (IDEA), revised in 2004 and renamed the Individuals with Disabilities Education Improvement ACT, requires that each state provide all eligible children with "a free and appropriate education" that meets their unique needs. 

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.

In order to support your advocacy, 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 services are provided by the state you live in from birth to age 3. For a child on the autism spectrum they may include Applied Behavior Analysis (ABA), speech and language therapy, occupational therapy, physical therapy, and a psychological evaluation. Families may also receive services that train parents to reinforce or adapt their child's new skills, as well as counseling to help the family adjust to having a child with ASD.

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 services that will be provided to meet the needs of your child and 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.

Once your child turns 3 you will stop working with the state office that has been providing the Early Intervention services, and start working with the Special Education department of your local school district. Special Education has a different focus from Early Intervention, which the state provides. Early Intervention works with the entire family to facilitate adjustment to having a disabled child in the family and to minimize the developmental impact of the disability. Special Education focuses on helping your child receive an adequate education in spite of any disability or special need.

At least once a year you will meet with representatives of the school department to collaboratively work out an Individualized Education Program (IEP) for your child. An IEP describes your child's strengths and weaknesses, establishes goals, and specifies how these goals can be met within the school system with which specific services. In order to successfully advocate for your child, you will need to be assertive. If your child will be mainstreamed in a public school classroom, he may need the assistance of a one-on-one aide or other special accommodations. If the school provides an aide, this person should have been trained and educated in autism.

As an advocate for your child, you may find that the services the school offers are inadequate, and that although no needed services currently exist, they must still be furnished. Alternatively, it may be determined that your child would progress best in a Special Education program, a special needs school, or with a home instruction program.

It is appropriate to get recommendations for intensive services from the specialists who have evaluated your child. And you may also want to have an outside advocate with you to help work out a satisfactory education plan.

Every child is different, and every intervention varies depending on the therapist. But here is what one mother of an 18-year-old child with mid-level autism said:

"Ben is verbal but his language is delayed and disordered. He talks out of necessity, not for social reasons. He lacks what is called 'social pragmatics.' His social interaction skills are poor but have improved as a result of a childhood of ABA (responding to his name and eye contact are much better as a result of millions of eye contact drills when he was young). His language is 95 percent response and 5 percent spontaneous expression.

The common denominator across the autism spectrum is social skills. I.Q. varies, language varies, self-stimulatory and other odd behavior varies, but there is always some degree of social awkwardness or a complete lack of social skills from the highest of functioning (HFA or high-functioning autism) to the lowest functioning (non-verbal, self- stimming, mentally retarded).

Back to Ben, he can do many things independently -- such as shave, bathe, brush his teeth -- which are called ADLs (activities of daily living). He can't independently ask for directions or seek help in a normal way.

Over the last four years, he has had a strong vocational component to his education both at home and at school. So, he has learned to cook simple things, load and unload a dishwasher, sweep the floor, and deliver packages. He still needs some assistance at home and a job coach at the work place. The goal is to get him to be independent doing these simple tasks in the future.

Ben does best when the tasks are simple to understand and repetitive. Since he does well with task completion, he can work off of a list. He reads (skills that took years to teach with an ABA approach), but his reading comprehension remains barely on a second grade level.

The goal is for him to work independently when he grows up. Unfortunately, there are few opportunities around here and we parents have to create them. Also, there are few assembly-line factories in this area -- a job placement which would serve him well and which he would be good at."

For more information, read this article on the specific treatments and therapies for autism.

During adolescence, many kids with ASD realize they are different. This can be very painful and lead to regression and acting out. You can let your child know you're there to help with any difficult situations. Finding a mentor to teach how to be comfortable in new social situation would be beneficial. It can also be helpful to send your child to a summer program for teens with ASD.

Of course, this depends on where you child fits in the autism spectrum, but for people less affected by autism, jobs requiring a lot of concentration may be a good fit, especially those that do not require many interactions with others. Such jobs include computer programming, graphic design, or perhaps filing or working in a factory. It's helpful to get vocational counseling to determine what would be the best job for your child and to help your child develop skills to perform a particular task.

When your child is still very young it is difficult (or impossible) to determine how severe his autism is. Some whose conditions looked severe when young have positive outcomes. For that reason it is crucial to get your child as much intervention as soon and as intensively as possible. For those who are diagnosed with mid-level autism, a group home with live-in support may be possible. As your child gets older, you can have an occupational therapist do an evaluation.

Care.com is a website that lists caregivers throughout the United States who provide assistance to people with special needs. You can search for caregivers near you and review caregiver profiles including photos, references and background checks, and work history. For specific listings of special needs caregivers, go to Care.com.