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Information for Parents Post- Diagnosis
The time following a child's diagnosis with an autism spectrum disorder can be one filled with confusion, dismay, and doubt, but it is important to remember that the child is not any different than he or she was before the diagnosis and should not be treated any differently. Next, it is important to read up on the latest science and information to understand what autism is and how to best approach treatment for your child. In addition, finding other families with members who have ASDs in your community can give newly diagnosed parents a source for advice as well as a support system.
Before beginning any form of treatment, parents should realize that as “spectrum disorders,” ASDs affect each person differently and to a different degree, so observing his or her child to see his or her strengths and weakness can be effective when searching for treatment. There are many forms of treatment that families can investigate to help with their child’s symptoms. Researching all forms of therapy will allow parents to find therapy that best suits the needs of their child with ASD.
Families should assess their own financial situation when beginning these treatments, which are often costly and ongoing. After beginning treatments, it’s crucial to understand that a child with ASD may not experience major improvements to their symptoms in a short period of time. Rather, treatment for the symptoms of ASDs is a lifelong process, with improvements occurring with a lot of hard work and investment. Although it can become frustrating, it is important to continue treatments in order to ensure the best outcome for your child.
Birth to 3-Years-old
Early Intervention, providing therapy to individuals with developmental delays before the age of 3, is one of the best ways to start your child on a path to realizing his or her full potential. Early Intervention services are provided through your state’s department of health. In order to qualify, the state may want to complete evaluations of your child (at their own cost). These evaluations may be time-consuming, but will ultimately become a tool you can use to advocate for the services your child deserves.
Once it is determined that your child qualifies, Federal law dictates that your family has the right to a publicly funded service coordinator who will create an Individualized Family Service Plan (IFSP) appropriate for the needs of your child and family. While the service-coordinator is paid for by the government, you have the right to select the provider you feel is appropriate for your family. The service coordinator will help the early intervention team to create an IFSP which includes outcomes that “address the entire family’s well-being and not only outcomes designed to benefit the child’s development.” For this reason, the IFSP will have goals that are designed for the family as well as for the child.
Three to 21-Years-Old
If your child is three-years-old or older, turn to your local school district to inquire about services for your child, such as physical and occupational therapy, speech therapy and behavioral therapy. The district will evaluate whether or not your child qualifies for special education services according to local, state and federal guidelines. These guidelines state that a child’s disability must interfere with his or her educational progress.
If your child is found eligible for services, the school is required to convene an Individualized Education Program (IEP) team and develop an appropriate educational plan for the child. Using the results of the full individual evaluation (FIE), the IEP team evaluates the child’s present level of academic progress. The team then determines what academic and/or supplementary support services the child requires in order to be making satisfactory educational progress. The team should not consider what services are available in the district when identifying the child’s needs, and only consider what will help the child to succeed.
Create a Safe Environment
Of course, your child is the same person after his diagnosis as he was before, so chances are you’ve already modified your home to be safe for your child. However, more and more studies show that nearly half of all children with autism wander from safe places. Make sure your child cannot open windows and doors to wander out to their favorite park. The time to make sure your home is safe for your child is now. Another important step to ensure your child’s safety is to contact local safety personnel to familiarize them with your child, provide them with a picture of your child, and explain that your child may not be able to help himself, or potentially even identify himself to authorities, in an emergent situation.
While you are taking important steps to secure services for your child, it’s important to remember that there are services for you as well. Now is a great time to start asking around for references for babysitters and other childcare providers. Simply having a babysitter with you in your home will help the sitter learn how to care for your child and will allow your child to become familiar with the sitter before you ever need to leave your child alone. Additionally, know that you may qualify for respite care. Don’t wait until you really need help to find a qualified provider for your child.
Creating short videos of your child, in moments of success and in moments of difficulty will help you keep track of your child’s progress. Organizing short clips of your child by week will allow you to notice if they are responding to any particular intervention. Additionally, having short clips of your child may enable outside education authorities to more clearly determine your child’s eligibility for certain services.
Review Your Insurance Coverage
Once you have the ball rolling on your intervention strategy for your child, review your health insurance policy. You may discover that your health insurance covers additional services not covered in your child’s IEP or IFSP. Additionally, you may learn of services you had not previously considered for your child and your family.
Take Care of Yourself
The weeks and months following the diagnosis of a child are particularly challenging and draining. Don’t forget to take time to care for yourself, even if that means going for a short walk alone. Maintain your relationships with other family members, your partner and any other children you may have. Find out about what parent support groups exist in your area, and meet other families who are in your situation. Finally, know that there are innumerable resources to help your family at this time. By taking care of yourself, you will be better able to make use of those resources and get your child on a path to success.