Early diagnosis is very important
All babies should go to regular well baby checks with there health provider. This means not waiting to go into the medical office until a baby has a problem. Going to newborn check ups, 2, 4, 6, 9 months, 1 year, 18mos, etc. checkups are recommended. Screening specifically for Autism Spectrum Disorder (ASD) should be performed at 18 and 24 months. If a screen is positive, it just means that there is some concern. A diagnosis cannot be made until a Comprehensive Diagnostic Evaluation has been performed.
A comprehensive early treatment program is called Early Intensive Behavioral Intervention (EIBI). After receiving an accurate diagnosis, a professional called a Board Certified Behavior Analyst (BCBA) will evaluate your child and recommend specific therapies, Applied Behavior Analysis (ABA) to be delivered in a specific location (home, school, or daycare).
The goals of treatment are to improve essential communication skills and other symptoms of autism that your child may experience. Many children will do so well they may enter school not needing special education services. Many insurance companies will help pay for these treatments so know the rules of your insurance company. If your child has Medicaid go to your local community mental health agency. An overview of diagnosis is available on the CDC Autism Spectrum Disorder screening and diagnosis webpage.
Parent teaching programs are becoming more and more available. These programs can assist family in understanding many of the invisible brain processes that go on with autism and allow them to support the therapies provided by professionals.
KIDS LEARN BEST FROM OTHER KIDS. This means getting your child around and in social settings with typical people. This can be very challenging because of the many symptoms of autism. Treatment should be focused on helping you and your child be successful in typical environments. This is different for different individuals and families and that is why intervention programs need to be suited to the individual's needs. Parents may have to be very creative to find groups that their child can be successful in.
If a person with autism has good language skills they may not have so many problems with social interaction in elementary school because elementary aged children are usually more inclusive. As children grow into adolescence the ability to participate successfully with their peer group becomes more important. Because autism is a social communication disorder, this is where previously successful kids may start to get into trouble. We believe educating your child about their disability and active social coaching give them the tools to be successful in these new environments. Without this kind of preparation kids can easily start to feel lonely or that there is something wrong with them. They may be vulnerable to bullying. Developing this kind of self image and repeatedly experiencing embarrassment or trauma can set kids up for additional problems. These may include depression, increased physical aggression or "acting out". Ideally middle and high school could be a time where they learn additional social skills, increased confidence and academic progress....just like their typical peers.
As grown ups, the ability to be successfully employed depends on a person's ability to be successfully immersed in typical culture. This does not mean that young adults who cannot tolerate immersion can not be successfully employed. The ability to be employed seems to be associated with increased quality of life for individuals with I/DD, independent of IQ, condition(s), and socioeconomic status.
The Dignity of Risk
Kids with ASD don’t learn without being allowed to take risks, just like their typical peers don’t learn without the opportunity to explore new learning, playing and working environments. PARENTS NEED TO LEARN TO LET THEIR CHILDREN BECOME MORE INDEPENDENT.
Many parents do not want to suffer with the tantrums they may have experienced in the past when challenging their child with new demands or changes in routine. This is one reason we may not expect the same kind of growth we do in typical children. Research shows us that parents tend to expect less from their children with I/DD then they are really capable of.
High expectations are associated with higher degrees of independence in our kids. This is easier said then done. Finding trustworthy individuals who can help your child learn to be comfortable in the outside world is important!
This term means lots of different things. When talking to educators it refers to a change in special education services to focus away from basic academic skills to skill that will help them be independent adults. This will look different for different people. Good information about this process can be found on Grand Valley State University's START Project webpage.
Issues to consider are:
Guardianship (age 18)?
Moving out of the house? Good ideas for obtaining housing can be obtained at Community Housing Network.
Work life? Ideas about training for and finding employment can be found at the Association for People Supporting Employment First.
See our resource page for other information, services, and support.
Keeping Yourself and Your Family Intact
Raising a family is hard work. Raising a family with one or more members with disability is even more complicated. Don't lose site of the big picture by getting lost in the overwhelming day to day issues and distractions. Give yourself a break. Most assuredly, most of the problems will still be there when you come back. Research suggests that respite care can be very helpful for families struggling with these pressures. For information on local respite visit Helping Hands Respite Care, or Residential Options, Inc. (ROI).
Some families my qualify for financial help to pay for respite services. Contact Community Mental Health for more information.
The Future of ASD and related I/DD
Human service agencies are projecting a huge growth in the number of people needing services to support living as independently as possible. There is a lot of change going on now in how these services are designed, provided and paid for. As a parent your involvement in advocacy today may be very important for your child’s success tomorrow. Educate your self about the issues.
The following are just a few of the top research institutions in the country. Let us know if you have a favorite.
Pay It Forward
Consider signing up to participate in research. Think of all the families before you who participated in research so your child could have quality therapy and programs.