Child Newly Diagnosed with Autism

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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.

 

As far as interventions are concerned, we recommend that parents utilize both approaches - therapeutic and medical - in order to achieve the best possible outcome for your child. Many symptoms of autism can be caused or exacerbated by underlying medical issues.  These medical issues cannot be remedied with therapy alone.

Traditional Therapies

  • Traditional therapies are the intensive early interventions provided to help the child:
    • Develop and improve skills
    • Enable learning
    • Minimize inappropriate behaviors
    • Set and achieve goals and objectives
  • These therapies include:
    • Speech Therapy
    • Behavioral Therapies (ABA, Floortime, RDI, etc.)
    • Occupational Therapy (OT)
    • Physical Therapy (PT)
    • Social Skills
  • Read more information on traditional therapies

 

Medical Therapies

  • According to this study, 95% of individuals with autism have co-occurring conditions
    • On average, each child has nearly five co-occurring conditions!
    • "That's just part of autism" should never be used as an excuse for not treating a medical issue that requires treatment
  • Medical therapies include:
    • Testing for genetic disorders and baseline testing
    • Testing and treating for underlying medical issues such as gastrointestinal issues, seizures, thyroid dysfunction, vitamin and mineral deficiencies, allergies, Cerebral Folate Deficiency, immune issues (PANDAS/PANS), etc.
    • See the Medical section for more information
  • Finding a good functional medicine doctor, who is familiar with the medical issues that are common to autism, is essential
    • Seek referrals from parents in your area or contact your local TACA chapter for recommendations
    • Your child may need help from multiple specialists in order to receive adequate medical care (neurologist, gastroenterologist, endocrinologist, etc.)
  • Navigating medical interventions can be challenging, but TACA is here to help
    • Our Programs and Services include:
      • Free online support group for parents where parents can go to ask questions and receive support
      • Free online educational events
      • Free Parent Mentor program
      • Parent conferences (registration scholarships are offered to those who need them)
      • Website with information covering a wide variety of autism-related topics
      • Chapter events
      • and more...

 

Keeping Family Healthy

  • Keeping family healthy is an important part of the stool and should not be ignored
  • Some families focus on the needs of the child with special needs while neglecting other children, spouse, and family members
    • Even though time is precious - paying attention to these other relationships is important
    • Take care of your marriage - being a single parent is hard
    • Seek the help of a family and marriage counselor if needed
  • Care for the Caregiver (that's you!)
    • Do not neglect your own health needs while caring for your child(ren)
      • Eat healthy and exercise
      • Stay up-to-date on preventative health care check-ups
      • Manage stress
      • Recognize that your best is enough
    • Look for local support groups to get to know other parents in your area for emotional and social support
  • Find out about the government Disability Service Programs that you're entitled to receive benefits from
    • These programs exist to help individuals with disabilities and their families, providing services such as:
      • Caregiver support (respite)
      • Health care coverage (Medicare)
      • Supplemental Security Income (SSI)
      • Waiver programs (Medicaid, Home and Community Based Services, etc.)
    • Programs and availability vary by state
      • Some states have long waiting lists - be sure to get on those lists ASAP
  • Take precautions to ensure your child's safety

 

Where to Start?

 

Be, Stay, Live Organized or Die By Paperwork

  • Manage medical records, assessments, and other important data electronically or in binders
    • Have these organized and ready to go for appointments
    • Never give your originals to someone else
  • Manage and update two "to-do" lists
    • Short List:
      • 2-3 items that can be accomplished in 1-2 weeks
      • This list contains the most important action items to be done
      • Keep this visible for everyday review
    • Long List:
      • This list includes all the things you have heard of, want to look into, etc. (this may end up being a very long list)
      • 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
    • Know that all practitioners, doctors and therapists alike, destroy their records after 5-7 years
      • Make sure when you leave a practice, you 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 it's better to 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 three legs of the stool during your autism journey including:
    • Traditional therapies
    • Medical therapies
    • Keeping the family healthy
  • Get involved in a support group