Guide for Parents of Newly Diagnosed Children
No one plans to grow up to be a parent of a child with autism.
At Bridges we recognize that the entire family is almost certainly profoundly affected by the problems of the child. Many times parents are afraid to tell their relatives or friends about their fears. Some families become very isolated, because it is so difficult to go out in the community with their child. Some families are embarrassed by their child’s behaviors. Often the siblings of the diagnosed child are affected very deeply as well.
Once the diagnosis has been made families may react in different ways. Often this is the most devastating event that has ever occurred in the lives of these young families. Some parents react to this news with a need to deny that it could be true. Some parents say they are relieved to have found the reason for their child’s strange behavior and learning problems. Many parents feel a urgent need to do something right away. This is a very appropriate response, as peer-reviewed research shows us that intervention is more likely to be successful if it is started at an early age.
What Parents Can Do
It is important to remember that there is something you can do. If you are in California, contact your local regional center and start the process to become eligible for services. If your child is over three years old you may also want to contact your local school district for the options they may provide. We strongly recommend you contact your local FEAT representative or other parent groups for help with emotional support, sorting through the tangle of regulations and rights, advocacy if needed, and to obtain information about services. Your local school district and/or regional center will also have information regarding options for treatment and other services. There are links to the FEAT and Alta California Regional Center websites in the web links section of this site. You will need to research the various options available for your child before deciding which one is the most appropriate.
There are options available to your child and your family to help all of you deal with this devastating diagnosis. People new to autism are often overwhelmed not only by the demands of parenting the child but by what can be a bewildering array of options. If you have found this site then you have already started researching your options. Options for treatment can generally be divided into two categories, those that are bio-medical in nature and those that are not.
Some of the more common non-biomedical approaches to children with autism are:
- Intensive early intervention applied behavior analysis (Some times called ABA or EIBT for intensive early behavioral treatment). This is what we do.
- Speech therapy
- Occupational therapy typically (including sensory integration)
- Special education classrooms, usually either with a specific autism curriculum such as TEACCH, or an eclectic curriculum.
- Socials or functional skills training
- Music therapy
Some popular biomedical treatments are:
- Special diets
- Special vitamins
- Treatment to remove toxins such as mercury or other heavy metals from the body
- Special drugs
It is especially crucial when researching biomedical options that side effects are explained to you in great detail. Many children who use biomedical approaches also use non-biomedical treatments such as ABA at the same time.
Bridges does not claim to have the expertise to advocate for or against biomedical interventions. We recommend that parents contact their doctors for advice regarding these treatments.
What to Look For When Considering Treatment Options
It is important when researching your options that you are able to evaluate the claims you may see for various therapies or programs. It is crucial that you make your decisions as an informed parent. It is appropriate to request and read the research supporting all the options you are considering for your child.
Many therapies claim to have been proved to be effective in research. It is important to evaluate the research that supports these claims, as some research is considered more reliable than others. All research should be peer-reviewed to be considered a reliable source. Peer-reviewed means that the research paper was submitted to other experts in the field to make sure that the experiment was performed correctly and that the claims made by the author were supported by the data of the experiment. The peers do not typically know the name of the submitting author. There is typically no payment for authors of peer-reviewed research in this field. However, they may be recognized for their research by their university, with offers of tenure or other similar career advances. When looking at research that was not peer-reviewed there is less certainty that the experiment showed what the author claims, or that any changes seen could not be attributed to other factors.
Research needs to show a change in an actual person with autism. Research that uses only the opinions of people involved with the child as data is not considered a reliable source of information. Autism is a medical condition. The research for treatment must be held to the standard of the medical community. A new medicine would not be considered adequately researched if the paper simply asked the opinions of people around the patient, rather than measure the changes in the patient directly.
Research needs to be done without bias. That means that if the person doing the research has a financial or other reason to want the data to show a specific result it is not as reliable as research done without that factor.
Having an ABA Program in Your Home
We recommend that all parents view at least one (and often several) of our clients in their homes before they start a program for their own child. This allows parents to see what actual therapy looks like and provides a chance to meet other parents and talk to them about what living with an ABA program entails. We have a short video of what therapy looks like: You'll find it as a link at left to "Towards the Light."
Intensity
One of the crucial components of effective ABA therapy is the intensity of the program. Intensity means the amount of time that therapy is provided on a one on one basis to the child. Typical children learn from the natural environment nearly every waking moment of their lives. Children with autistic spectrum disorders seem to have a great deal of difficulty learning from the natural environment. The intensity of the program allows these children to learn for a higher percentage of their waking hours. It usually reduces the amount of time they may be engaging in inappropriate behaviors, as these often occur when the child is not engaged in an activity. The end goal of all intensive programs is to give the child the skills to learn from the natural environment as other children do. At that point the child no longer need the high level of intensity.
Peer-reviewed research has shown us that programs that do not provide enough hours of therapy produce significantly poorer results. Current research demonstrates that less than 20-25 hours per week of one on one therapy for the children is considered subclinical. That means that intensive programs will need to be provided for at least 25 (and 40 is the standard most often cited) hours per week. During intensive programs a therapist will be working with the child approximately 5-8 hours per day on weekdays. Usually this is divided into morning and afternoon periods of 2 to 4 hours with a break between them. Children are also provided many short breaks during the therapy time to prevent fatigue and to provide opportunities for generalization of skills. The level of intensity for each child Bridges serves is prescribed after the initial assessment. This level sometimes changes as children progress. Therapy takes place year round. Vacation breaks of longer than two weeks present a risk of regression and are not recommended.