Caring for a Child with Autism Spectrum Disorder: Severe Autism

• 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 or her limitations.
• Educate yourself about your child's condition.
• Focus on helping your child to be "the best he or she 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 Speaks

Autism Society of America

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.

• Educate yourself. Talk to other parents. Read the literature. Consult specialists.
• Get the most help you can, as soon as you can. Early Intervention, as much and as soon as possible, can give your child the best chance of fulfilling his or her potential, whatever that is.
• Once you begin an early intervention program, your child will be receiving 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 or she 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 in which your child can relax, and feel secure. Visual cues that your child can identify will help, such as colored tape marking areas that are off limits. If your child has tantrums or injures him, be sure to safety proof your house.
• Find respite care. Everyone needs a break and you deserve one. Those families who have children with autism and utilize respite care report less stress than those who don't. Due to the additional care needed by children with autism, respite care is considered a basic need by their families and will help preserve family stability. You can search for a respite caregiver on Care.com or through ARCH, the National Respite Network.

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 have to 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 and your child has autism, this aide should have been trained and educated in autism, or in whatever your child's special need is.

As an advocate for your child, you may determine that the services offered are inadequate for your child, and that although needed services currently do not 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.

From the very beginning, it is important to keep records (perhaps more than one copy, in different places) of all meetings you attend, all assessments and recommendations based on those assessments, all reports and more, in a well organized and easy-to-access place. You have the right to request copies of all school reports on your child. It is best not to rely on the school to keep and maintain records, as those may be lost.

It is appropriate to get recommendations for intensive services from the specialists you have gotten to evaluate your child. And you may also want to have an outside advocate attend meetings with you to help work out an education plan with which you are satisfied.

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.

• Since many kids with autism wander away, introducing yourself and your child to the neighbors and police, and explaining that your child has autism and that if they ever see your child alone, they should contact you immediately, can prevent many problems.
• Water seems to attract 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 or she ever gets lost.
• Have a current photo of your child on hand to distribute in case he or she 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 in case he or she is found.
• Distribute a handout with all relevant information to any caregivers for your child.

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.