Autism FAQ

Below is my collection of favorite resources.
I hope this saves you time or introduces you to something that helps your family.
When my son was diagnosed with autism in 2001, I wasted a LOT of time looking for resources I needed.

Now, nearly two decades later, I am amazed that parents are still having to waste time looking for the same resources I spent so much time finding.

Here are a list of my favorite resources.  I hope it saves your family some time and money.  If a link is broken, please let me know.  If you have a great resource you want me to add, let me know.

To read the answers, click on the plus sign to the right of the question.

How can I tell whether my child is developing normally?

Below are links to screeners.  A Screener is just that–a quick assessment of which children need the multi-disciplinary team of experts to evaluate a child for autism.  A good evaluation should be completed by at least a developmental pediatrician, a psychologist, and a speech pathologist.  A full evaluation can take anywhere between 4 – 6 hours.

CDC-Learn the Signs, Act Early This developmental checklist gives a detailed breakdown of what typically developing children do at various months & years.  The Autism Navigator, gives a list of red flags for autism in toddlers.

Or use this Video Glossary from the  Autism Navigator  to help parents and professionals determine when a child’s behavior is fine or an early red flags.  It also shows the  diagnostic features of autism spectrum disorder.

Free M-CHAT Screen Tool  This short test of simple questions that you ask yourself or the parent about the toddler’s behavior takes about 15 minutes and is recognized as a good first screening tool for very young children suspected of having autism spectrum disorder.  It’s the same screener that your child’s pediatrician would administer to determine if the child needs an in depth evaluation.

What is autism?
The diagnosis of autism is currently defined as a mental health disorder by the American Psychiatric Association.  The definition has changed over time.  The most recent definition was developed in 2012 in the DSM-V (Diagnostic and Statistical Manual of Mental Disorders) and caused a big controversy because of the major change of putting Asperger’s under the umbrella of autism.

This link takes you to the actual criteria that determines whether someone meets the definition for autism:  CDC:  299.00 Autism Spectrum Disorder. Please note:  there currently is no blood test for autism.  This means that two different evaluators can evaluate a person and have different opinions about whether a person meets the characteristics of autism or not.   The biggest changes for children with autism are:

DSM-4 DSM-5
Autistic Disorder Autism Spectrum Disorder
criteria–looser criteria–stricter
included PDD-NOS as a subcategory no PDD-NOS
Asperger’s listed as a separate diagnosis includes Asperger’s, calling it high functioning autism

What is Autism, an Overview from the national group  Autism Speaks

What is Asperger’s Syndrome from the Austrailian expert  Tony Attwood   Even though Asperger’s has officially been removed from the DSM, no one knows high functioning autism and Asperger’s better than Tony Attwood.

Autism Fact Sheet NIH (National Institute of Health), National Institute of Neurological Disorders & Stroke

Autism 101 a 30 min on-line course from the national group  Autism Society of America

Free On-line autism training modules from the Ohio Center for Autism and Low Incidence Disabilities

How can I find other parents who 'get it'?
Parent Mentors – the programs listed below match families to another person who has a child with a similar disability who can act as a mentor.  If there’s not a parent support group in your area, this may be a good option for you.  Every state has a Parent to Parent match program.  So google your state’s name + parent to parent to find it.  The TACA and Autism Link Mentor programs are national.

Tx Parent to Parent Mentor Program

TACA (Talk About Curing Autism) Mentor Program

Parent Support Groups:

Parent support groups are the best sources of information–especially when you are trying to work your way through “the system”. Here are some national and Texas resources that will help you find either a parent mentor; local support group, or an on-line chat group.

Click To Find a Parent Support Group Near You in Texas ( by Region )

Online Communities:

FaceBook has a wealth of groups.  Just search “autism”  “special needs”  and you will find a moms group in your area.  This is key to being able to ask about local service providers (like speech clinics or doctors etc.)

Conferences:

There are lot of autism related conferences in every region of the country.  I have made life long friends with people I have met at conferences.

Some of the biggest national conferences are:

  • Autism One— they have a video archive where you can stream talks from past conferences
  • TACA

Some major conferences in Texas are:

Can autism be treated?
“If you’ve seen 1 child with autism, you’ve seen 1 child with autism.”  Unknown

Autism Spectrum Disorders are unique in that it affects each child distinctly, uniquely.  This means, as a parent, you must become an expert in how autism affects your child.  There is research emerging that has identified biomarkers that are so common in children with autism, that a study showed these biomarkers can predict which children will be diagnosed with autism.  Additionally, a 12 month study demonstrated that dietary and nutritional intervention resulted in a study participants gaining:

  • 9 points in IQ
  • 18 month gain in developmental milestones
  • many additional medical improvements
    • reduction of digestive issues (diarrhea, constipation, etc.)
    • improvement of sleep
    • improvement in other physical issues

If your child received his/her label from the school, PLEASE also get a full medical workup.  We know that children in the spectrum have underlying medical issues, most frequently digestive in nature, that often go unaddressed.  However, your child could also have seizures, thyroid issues, severe allergies, etc in addition to autism.

Autism Speaks Summary of Treatment Options

Autism Society of America Treatment Options (although I do disagree with their statement that there is no known cure.  I have met people who have been cured of their autism, which means, they no longer meet the diagnostic criteria, and can live their life independently, without supports).)

Autism Research Institute: 26,000 Parents give Feedback about which Treatments Really Helped

Autism Research Institute: Autism Treatment Evaluation Checklist (ATEC)

Organization for Autism Research: Parent Guide to Research

TACA (Talk About Curing Autism) Medical Treatment Links

Common Treatment Options Please note that this list is not intended to be exhaustive, but rather a jumping off point for some of the most commonly used or accepted treatments available in 2018. Because of the heterogenus (individual) nature of how autism affects each person, Advocate Well does not endorse any one treatment protocol.  We trust that the parent/caregiver will use this information to work with a trusted health care practitioner to develop the best plan of care for their child.

Applied Behavior Analysis (ABA)

The Cambridge Center on ABA

ABA in parent friendly language University of Massachusetts Medical School Shriver Center

FEAT-Houston

Floortime

Interdisciplinatry Council on Development and Learning Disorders
(this website also has a listing of providers)

Sonrise

The Son-Rise Program

Biomedical Interventions

What is biomedical by Dr. Sidney Baker from the  Autism Research Institute

The Parent’s Role in Biomed treatment from the parent group Talk About Curing Autism

Nutritional Intervention–

Please do NOT ask your doctor about a dietary approach.  Doctors get 1 class in nutrition when they are undergrads, and NO nutritional training in medical school.  They know next to nothing about nutrition.   Find a nutritionist or a naturopath to help you with the nutritional intervention piece.  To demonstrate how behind the average doctor is about effective nutritional intervention, most still do not accept the Feingold diet despite 30 years of research to back it up.

Overview of various dietary approaches from site created by a certified nutritionist Nourishing Hope

Adams, et.al. Comprehensive Dietary and Nutritional Intervention for Autism Spectrum Disorder, a randomized, controlled 12-month trial

Links to websites that focus on a particular dietary appraoch

Gluten Free Casien Free;    Body Ecology;    Specific Carbohydrate;    Low Oxalate;    Feingold

Sensory Integration

What is Sensory Processing Disorder?

Other Treatment Options:

Hyperbaric Oxygen Treatment

HBOT – Hyperbaric Oxygen Treatment

Randomized controlled study

Social Skills Training

Social Competency is more that teaching social skills? (from Michelle Garcia Winner)

Craniosacral Therapy

Discover Cranio-Sacral therapy  from the   Upledger Institute

 

 

What's the latest in research?
Where can I learn more about autism research?

Interagency Autism Coordinating Committee

US Davis M.I.N.D. Institute

Latest on research from the  from the national group Autism Research Institute
Information about  Research Grants and the Autism Tissue Program from the national group  Autism Speaks

Organization of Autism Research focuses on applied research improving the lives of families.

Schafer Autism Report keeps up with all things autism: research and general news.

What does the state of Texas provide for children with autism?

Ages 0-3

Early Childhood Intervention (ECI in Texas is administered by Texas Department of Health & Human Services) (ECI can pay for ABA services for your child, but you have to ask/advocate for it).  In 2013 ECI services were drastically cut by the State.  Unfortunately, many providers have left and services are much more difficult to get.

Preschool

PPCD (preschool programs for children with disabilities) in the public school beginning at age 3. Children with disabilities can transition from ECI to public school at the age of 3. For more information on what you need to know about school, go to the school section.  The public school does not provide intensive ABA even if you advocate for it.

Headstart

Texas Project First, Headstart information page

3-8 years old Texas autism programs

Texas programs providing ABA for children with autism

To see a general overview of services available through DARS (Department of Aging and Disability Services) division of Texas Health and Human Services

Social Security Benefit Information

Understanding Social Security  Income from the Social Security Administration

to help you understand SSI.  In order to qualify the person must meet an income requirement and a disability requirement.  If the person with a disability is under 18, then the entire family must meet the income requirement, which includes NOT having more than $2,000 in any form of savings, including retirement.  You must also show that the person applying is significantly delayed compared to his/her same age peers.  If the person is over 18, those income requirements only apply to the person with a disability.

Medicaid waivers

These are for children, youth, and adults, but the wait for these programs is between 4 – 12 years, so sign up on the “interest list” early in order that you have a chance to access the services while your child is still a child

Please note: In order to qualify for Medicaid waivers, only the child’s income is used (for all except the Tx Home Living Waiver).  To understand how to keep assets for a child with special needs and still qualify for Medicaid waiver services, please read A Well-Built Special Needs Plan article at Archer Consulting Group.  .

Texas Medicaid Waiver 101  Roadmap to Understanding Texas Medicaid Waivers

The majority of children with autism receive services from the three waivers listed below: Each waiver has addition eligibility requirements.  Please read the Roadmap for the details about each waiver.   whether the waiver is offered in the county where you live when signing up.  There are other waivers in Texas, and to learn about them all please read the RoadmapPlease note: Behavior therapy is available through these three waivers only recently as a result of the work of advocates.

  • HCS (Home Community Services);once in, you do not age out.  Person MUST have an IQ of 75 or below.
  • CLASS (Community Living And Support Services);once in, you do not age out
  • MDCP (Medically Dependent Children’s Program);  services end at 21 years of age

State Supported Living Centers

Texas is one of the last states to still institutionalize people with disabilities–despite the large cry for community based services and the great expense to the state of Texas.  Click here to learn more.

Where can I find more information? Download the must have reading list?
This was compiled by parents in Texas over time on a wide variety of subjects.

It’s fairly long, so don’t be overwhelmed.  Take the list as a suggestion, or jumping off place of where to find good titles.

Choose one book from the personal/family journey section to begin.  If you have a child under 5, I highly recommend the Jim Ball’s Early Interventions & Autism to begin with.

From there, I would recommend

  • Nourishing Hope (in the dietary section),
  • The Out of Sync Child (in the sensory section),
  • Educating Children with Autism(in the general section), and
  • The Autism Revolution by Martha Herbert (in the biomedical section).

 

Download the Reading list — click here

Another great on-line resource is the Autism Exchange:  another amazing resource created by parents for parents.

How can I pay for my child's ABA treatment?
People use a combination of insurance, grants, and their own money.

hand holding stack of money

Insurance

Insurance is complicated because your coverage depends on:

  • whether your benefit plan is governed by state laws (fully funded) or federal laws (self funded)
  • how good of a plan your employer has purchased from the insurance carrier
    • Please note:  Coverage does NOT depend on the insurance company.  It depends on the plan that company provides.  For example:  United Health care could provide ABA under a self funded plan to one company because that company has negotiated those benefits to be a part of their corporate health care plan.  A different company could have a United Health care plan that does NOT provide ABA coverage.
  • what diagnosis codes you are using
  • and what CPT (Current Procedural Terminology) or treatment code you are using

The good news is that a lot of progress is being made in some areas.  Blue Cross Blue Shield has lost major class actions suits about providing ABA.  Cigna is now offering ABA as a standard feature in their plans.  Also, in the 41+ states that have enacted some type of autism coverage mandate, it may be possible to purchase a child only plan that covers the mandated services (usually ABA).  This child only plan (state regulated) would be in addition to your family’s self funded (federally regulated) pan.

General Information

Basic insurance tips and tricks from the parent group   Talk About Curing Autism

About.com: How to get your child’s treatments covered by insurance

Alliance of Claims Assistance Professionals A group where you can hire someone to help you file your claims with your insurance company.  They can help you make sense of the bills that you get and how to make the most of the insurance coverage that you have.

FaceBook has insurance chatgroups to network with parents around the country so that you can get help in your state.

Links Specific to Federally Regulated Plans

HealthInsurance.org explains about autism coverage under the ACA in this article.

Links for Families with Low Income

Children with Special Health Care Needs (CSHCN) (for those with no insurance or Medicaid)

This position paper from the Association of Maternal and Child Health is a little technical, but it provides a lot of useful information about ABA coverage for children with autism as Children with Special Health Care Needs.

Check with your state’s Medicaid to see whether coverage for ABA is provided.

Links Specific to Texas Regulated Plans (fully funded) (check with your HR rep to know if your plan is state or federally regulated)

Texas Department of Insurance

Texas early intervention mandate for children with autism passed in 2007, state funded plans

Links to Texas Programs for Low Income Families

CHiP (CHiP will not pay for ABA at this time)

Medicaid: Texas Health Steps (at this time, Texas Medicaid card will not pay for ABA unlike many other states, etc.  A lawsuit in 2017 brought this up, but was settled and only secured ABA reimbursement for those children named in the lawsuit.  Contact Disability Right Texas if you would like to sue the state of Texas to secure Medicaid reimbursement for your child’s ABA.

Grants

The Autism Support Network keeps a list of organizations that provide grants to families.

Autism Grant Spreadsheet from TACAnow (Talk About Curing Autism) Now

Autism Assistance Resources

Brent Woodall Foundation:  makes modest grants to families of under 1,000 dollars; just one of their programs

Autism Rescue Angles funding families in the greater Houston Area of Texas

And there are many more.

 

How can I make sure my child is getting what he needs at school?
Empowering parents to get the services and supports their child needs at school is one of my passions.  That’s why I created the Speak Up For Your Child Bootcamp.  I walk you through the who, what, where, when, and how of effectively advocating for your child.

However, the links below can help you too.

Learning the rules

Texas project first– a Texas specific, parent friendly website about the world of special education 0-21: written by parents for parents

Legal Framework this website from Region 18 provides a somewhat friendly guide to the rules governing special education in Texas. It is in English and Spanish, and has a separate section for parents and educators.

Texas Side by Side this is a free, downloadable document that places the federal IDEA law, the state special ed law, and the Texas Commissioner Rules into a columns side by side, so that you can easily see where the differences are.  Very useful for ARD meetings when the staff are telling you that something is not in the law.

Commissioner’s Rules on Special Education the actual rules, but it can take a little digging to find what you need here

www.wrightslaw.com a great, general special ed website run by a lawyer who received special ed services as a child.  A wealth of information about every IDEA related topic that exists.

NICHCY–National Dissemination Center for Children with Disabilities:  a national source center on children with disabilities with a wealth of information about disabilities, public education, and research based educational practices

To order or download a free short booklet that explains your and your child’s rights under Texas special education ,  (If you are in a different state, check with the state chapter for the ARC or Disability Rights in your state.)

It’s a Good Idea from the ARC of Texas

Vaccine rights information: Texans for Vaccine Choice

The Texas Educational Service Center (ESC) are regional training hubs for educational staff and parents.  There are 14  regions, and each one has a specialty focus, some even offering conferences:  positive behavior supports, transition, autism, dyslexia, etc.   Parents are welcome at most of the trainings.   Click here to find out about the Texas Statewide Leadership for Autism Training.

If you’re thinking about homeschooling your child. . . .

 

When you a very specific question about the rules or need to find someone to help

Council of Parents, Attorneys and Advocates; a national organization filled with friendly and knowledgeable parent, advocates, and attorneys who can answer questions and direct you to resources.

Disability Rights Texas.  (they are limited on amount of help and types of cases that they can take).

Partner’s Resource Network the IDEA funded parent education organization for Texas.  They offer training, webinars, and answer questions.

The ARC of Texas has local chapters throughout the state that offer training in topics related to special education.  To find one near you click here.

What’s the difference between IDEA and 504?

There are many great FaceBook groups.  Do a search to see if your school district already has a parent group started.  If not, why not start your own?

 

Special Ed specific to Autism in Texas

Texas Autism Supplement;  for all children in Texas who are eligible for special education under AU (autism) the considerations listed in the document must be considered.  The supplement does not add to special education under IDEA2004, but rather clarifies considerations unique to children with ASD.

Texas Statewide Leadership in Autism–Texas Education Agency’s (TEA) autism initiative run by Region 13. The “training” section lists all the autism specialists at each of the 20 regional education service centers (ESCs). The “manual” lists a compilation of teaching methods supported by research.

Texas State Autism Conference– The next conference is for Dec 3-5, 2009. There are trainings from past conferences available on DVD that can be checked out from your local ESC.

 

General Disability Education Conferences

Many local parent groups sponsor annual resource fairs.  Check the “how do I connect with parents?” section to find a local group near you.  Also, check with the special education director in your district, because they are supposed to be keeping up with community resources for parents in the area.  You may be able to attend a conference as a part of the parent training requirement of the autism supplement.

 

Inclusion Works Conference sponsored by  The ARC of Texas

Texas Parent to Parent Annual Conference

504, Dyslexia, & Autism Conferences sponsored by the Council of Educators for Students with Disabilities,

Council for Exceptional Children Annual Conference

My child is about to age out of school. How can I plan for what comes after high school?
Ideally, you will want to start planning for transitioning out of public school services starting at age 14.  The autism supplement allows transition planning for Texas students with autism to start at any age. Be sure that when your student with disabilities turns 17, you ask the school about what form they need from you in order to continue representing your student as a part of the IEP/ARD committee.  Once your student turns 18, they can represent themselves without you at the ARD/IEP meeting.

Transition planning should be strength based, and should include a realistic plan for:

  • where the student will live after high school
  • what will they do besides sitting on the couch
    • what education will they pursue after high school
    • what vocational training will they pursue after high school
    • whether they will get training then work or have a daily activity in a day habilitation program
    • signing them up for SSI benefits if appropriate
    • signing them up for the state vocation training and support program  if appropriate.  In Texas, that is now the Texas Workforce Commission.
    • transportation to their various activities

You ideally want to sit down with the student, and plan out how they can pursue their interests in a future job or education path.  A key part of this will be a good assessment.  Peter Gerhardt (the US thought leader on services for adults with autism) has developed an assessment to help develop a plan.  James Partington, the BCBA behind the ABLLS, has developed the Assessment of Functional Living Skills.

Students are allowed to receive services at public school until the age of 21.  Each state interprets that a little differently, and in Texas that means until the end of the school year when they turn 22.  While schools offered some programs for students with more academic challenges, they have been slow to offer programs for higher functioning students with behavior or executive functioning issues who may not be ready for college from an organization and social skill level.  A new law that was passed in 2017 changes that, and you will begin to see more programs along those lines.

Click here to learn about parent’s role in transition process.

Have questions, find out more about the supports available for independent living, work, and college from the  Texas Statewide Transition Network

Texas transitions conference  I cannot recommend this conference highly enough.  It is very empowering to hear speakers talk about programs and what is possible in different areas.  You will meet service providers and other parents who will inspire you about what your adult learner can do.

What about my adult with autism who has aged out of public school?
A fabulous starting place is the 2007 Rehabilitation of Individuals with Autism  Spectrum Disorders.  Also, if you haven’t yet, review some of the links in the previous question about transitioning out of high school.  Much of the same information applies.

Transition Planning–Transition planning should have started when the person was 14.  However, it’s better late than never to plan.  People with autism can have a great life in the community!

Have questions, find out more about the supports available for independent living, work, and college from the  Texas Statewide Transition Network

A good assessment of strengths and weaknesses for adult life is the Assessment of Functional Living Skills from James Partington.

Person Centered Planning information and course from Cornell University

A plan for adult life should include:

 

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