Child Newly Diagnosed with Autism
This brief introduction is an important overview for the parent when a child is diagnosed with autism. It provides suggestions for next steps for your child.
You have entered a new world with your family – AUTISM.
Having a child with special needs require focus and diligence.
It is important to focus on the three core components of managing your life after the diagnosis. Think of these three areas like a stool – without one leg the stool will fall over.
* Traditional therapies are the intensive early interventions provided to help the child:
o Minimize inappropriate behaviors
o Enable learning
o Set and achieve goals and objectives
* These therapies include:
o One-on-one therapies such as applied behavioral analysis (ABA), Floortime, RDI and others
o Speech therapy
o Occupational (OT) or physical (PT) therapies
o Social skills
* Read more information on traditional therapies.
* Treating children with autism with only one therapy either biomedical – or – traditional therapies is not enough. You need to focus on both.
* Biomedical therapies include:
o Testing for genetic disorders and baseline testing
o Testing and treating for other problems besides autism such as gastrointestinal, immune, allergy, metabolic and thyroid dysfunction.
o See the Medical section for more information.
* Biomedical therapies may be harder to grasp but diligent effort, research and persistence will pay off.
* Most individuals with autism also have medical conditions. These conditions need attention and treatment.
o It is important to never let the excuse that “your child has autism” be the reason for NOT TREATING a medical issue that requires treatment.
* Remember: Autism is treatable via biomedical interventions. There are many choices.
o Consider going to a DAN! (Defeat Autism Now!) conference. Regardless of where the next DAN! Conference is – it is worth the time and travel.
o If you cannot travel, you can see presentations from previous DAN! conferences.
o Find a DAN! doctor
Keeping Family Healthy
* One of the most devastating events to happen to a family is the diagnosis of a special needs child.
* Many families focus on the needs of the child while neglecting other children, spouse and family members.
o Even though time is precious – paying attention to these other relationships is key.
o Managing health of care takers is also important. Do not neglect your own health needs while caring for a special needs child.
o It is important to investigate local support groups for family and marriage counselors in your area
* The divorce rate the U.S. is high enough – but odds increase when you have a special needs child. It is your job to buck these odds and whenever possible stay married.
o It’s important to note that special needs children do better in a two-parent family.
* Keeping family healthy is an important part of the stool and should not be ignored.
* Don’t go broke unnecessarily. Read the Autism-on-a-Budget series and Who Pays for What?
Where to Start?
* What’s your journey going to look like?
* Read about all the legs of the stool including Traditional Therapies and Biomedical Therapies.
o Start the gluten-free, casein-free, soy-free diet.
* Get an independent assessment and diagnosis of your child’s unique needs.
o Assessments outside your regional center, early intervention agency or school districts are important.
* Under the age of 3, look into early intervention in your area and get on wait lists if necessary.
o The “wait-and-see” approach can be devastating and is not recommended.
o Children who receive intensive early intervention have a better prognosis for the future.
Be, Stay, Live Organized or Die By Paperwork
* Manage medical records, assessments and other important data in binders. Have these organized and ready to go for appointments.
* Manage and update two “to-do” lists
o Short – 2-3 items that can be accomplished in 1-2 weeks. Keep this visible for everyday review and pushing these items forward. This list contains the most important action items to get done the fastest.
o Long – This is a very long list. This list includes all the things you have heard of, want to look into, etc. This list is put in a drawer and only used when you pull from when the short list is done.
Warning – looking at this list regularly can make you irritable!
* Get a scanner with an auto-document feeder so you can drop 50 pages in and just walk away while it does the work.
o Know that all practitioners, doctors and therapists alike, destroy their records after 5-7 years so make sure when you leave a practice, obtain copies of your ENTIRE file and scan in case you need them later. Even years later. That is information you cannot ever get back when destroyed so be safe, rather than sorry.
Bringing It Together
* Without the three legs of the stool being maintained – the stool with fall over. It is important to maintain all legs of the stool during your autism journey including:
o Traditional therapies,
o Biomedical therapies and
o Keeping the family healthy.
* Find professional resources in your area from either:
o TACA resource directory
o Go to TACA-USA to join more than 1500 families from all over the USA. On TACA-USA, you can get recommendations for therapies and providers as well as lots of support.
o Apply for a TACA Mentor. This is a free program that will match you with an experienced parent to help guide you on the journey.
o If you live near a TACA chapter, you can go to a meeting, email them or join their regional Yahoo! group. Look for a chapter.
* Get involved in a support group in your area.
o The best advice I have ever received has been from a family. It is important to get connected in your community. If TACA doesn’t have a chapter near you, Google “autism support” and your state to find local groups.