Autism FAQ
I hope this saves you time or introduces you to something that helps your family.
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. [activecampaign form=19]
How can I tell whether my child is developing normally?
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
Basic of Autism 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
My child was just diagnosed with autism, now what?
1. Hold off on your child’s vaccinations. While the whole question of the link between vaccinations is highly controversial, there is evidence that a subset of children have a genetic trait that reacts badly to certain vaccine antigens. Until you can determine whether you child carries that gene, you would be wise to delay your child’s schedule.
2. Find a nutritionist through www.nourishinghope.com to help you to select, implement, and customize one of the 13 diets known to help children with autism. There is tremendous evidence to support dietary interventions for the majority of children with autism. Anyone who says otherwise, doesn’t know how to read nutritional research and should be ignored.
3. Start learning how to be your child’s case manager. That means it’s up to you to find out what services are available and how to access them. Other parents are usually the best source of information.
Early Intervention & Autism: Real life questions, real-life answers, James Ball.
TACANOW: Collection of Articles for Parents of Newly Diagnosed Children
Autism Research Institute New Parent Information
FEAT-NT (Families for Effective Autism Treatment-North Texas)
How can I find other parents who 'get it'?
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:
- TEA (Texas Education Agency) Autism Conference (if you request it at an ARD meeting, the school will pay for you to attend this as parent training)
- Autism Education Summit
- Inclusion Works (this could also be requested as parent training at an ARD meeting)
- Texas Autism Resource & Research Center
Can autism be treated?
Although this is becoming a controversial topic among adults with autism who don’t feel they need to be treated, a person’s quality of life can be significantly improved with treatment. How much can it be improved, is variable.
“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 Research Institute: 26,000 Parents give Feedback about which Treatments Really Helped
Autism Research Institute: Autism Treatment Evaluation Checklist (ATEC)
TACA (Talk About Curing Autism) Medical Treatment Links
Autism Research Institute Information on Treatment Options
Autism Research Institute Description of 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.
Organization for Autism Research: Parent Guide to Research
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)
ABA explained by parents to parents
Floortime
Interdisciplinatry Council on Development and Learning Disorders
(this website also has a listing of providers)
Sonrise
Biomedical Interventions
What are biomedical interventions (from TACA)? from the Autism Research Institute
The Parent’s Role in Biomed treatment from the parent group Talk About Curing Autism
The Australian Centre for Genomic Analysis: Something I’m super excited about these days. This center provides individualized, targeted supplement recommendations based on your child’s genetic profile of 600+ known genetic snips in autism. Combine this with a genetic profile of the microbiome that is treated through home grown yogurt seeded with targeted bacteria cultures, and you have a powerful combination that will help your child make significant progress.
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 Soy 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
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?
Interagency Autism Coordinating Committee
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 Roadmap. Please 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!
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?
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 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 Grants for Families keeps a list of organizations that provide grants to families.
Autism Grant Spreadsheet from TACAnow (Talk About Curing Autism) Now
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?
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.
The Center for Parent Information and Resources.
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. . . .then start with the link.
When you a very specific question about the rules or need to find someone to help
COPAA; 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,
My child is about to age out of school. How can I plan for what comes after high school?
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
This 57 page downloadable guide was produced by TEA (Texas Education Agency) Texas Transition and Employment Guide.
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?
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:
- who will make financial and life decisions for them
- how will they pay for their life
- SSI (social security income)
- Texas ABLE accounts
- Special Needs Trust
- work
- Texas Workforce Commission
- where will they live
- Affordable housing: in Texas, called section 8
- Group Home Living (ICF: Intermediate Care Facilities)
- state supported living centers
- what leisure activities do they like/want to pursue
- day habilitation
- how will they be transported