Your Autism Journey
Year One

Autism Journey Blueprints ©

A visual foundation of best practices for your child

Autism Journey Year One

1

Formal assessment and diagnosis: neurologist, behaviorist, speech & OT

2

Ruling-out medical tests: genetic disorders like: Fragile X and Rett Syndrome. Perform MRI & 24 hour EEG.

3

Call Applied Behavioral Analysis (ABA) providers and get on wait list. Implement intensive 1:1 program.

4

Start the Gluten Free/Casein Free/Soy Free (GFCFSF) Diet

5

Encourage proper sulphation with nightly Epsom salt baths

6

Find a qualified doctor to identify and address any underlying medical issues your child may have.

7

Remove allergens (from diet and environment).

8

Remove additives, preservatives, and dyes from all foods. Go organic and clean diet

9

See an audiologist for a complete hearing evaluation.

10

Start basic supplementation and probiotics

11

Test for and treat YEAST (Go low sugar and low carbohydrates)

12

Investigate & try the "Bs" - B6, B12, TMG or DMG, SuperNuThera

13

Begin Omega supplements like cod liver oil, or flaxseed meal, etc

14

Get support and information!! Attend regular TACA or other meetings

15

It is all in the POOPS: deal with the constipation or diarrhea

16

Evaluate glutathione - try oral, topical then IV - with your doctor's help!

17

Start social skill development - with structured play dates at home

18

Hire a special education attorney or advocate. Learn your legal rights!

19

Understand health insurance coverage and reimbursement

20

Keep your marriage and family intact

21

Help your child obtain 8-10 hours of sleep each night

22

Further refine diet: remove phenols, salicylate and corn

23

Remove toxins from water, bedding, clothing, etc.

24

Fathers are important too!

This document is a “sample” checklist to consider in planning intervention for a child affected by autism. Please note, the order and action items will vary by child.

This is only a sample. Please consult with your child’s development and medical team for what is appropriate for their individual needs.

Autism Journey Year Two

1

Perform annual assessments: behaviorist, speech and OT

2

Perform annual medical tests: Comprehensive stool test, CBC, RBC, allergy panel, etc.

3

Evaluate all medical and traditional therapy options for efficacy.

4

Get involved in state and federal legislation efforts.

5

Continue social skills efforts with age-appropriate activities. Consider social skills videos

6

Keep learning your child's legal rights and get educated

7

Get an immune assessment. Consider oral IG, or IVIG

8

Consider listening therapies

9

Consider a rotation diet to prevent future allergies. Or other diets SCD, BED if GFCFSF is not enough

10

Refine supplements: Change brands of supplements as needed

11

Continue education: Attend conferences, webinars and others

12

Continue receiving respite and support. Keep your marriage and family intact

13

If your child is 6 or older, consider CAPD evaluation by an audiologist

This document is a “sample” checklist to consider in planning intervention for a child affected by autism. Please note, the order and action items will vary by child.

This is only a sample. Please consult with your child’s development and medical team for what is appropriate for their individual needs.

Autism Journey Year Three

1

Perform annual assessments: behaviorist, speech and OT

2

Perform annual medical tests: Comprehensive stool test, CBC, RBC, allergy panel, etc.

3

Get involved in state and federal legislation efforts.

4

Continue social skills for advanced needs with local providers.

5

Refine supplements: Change brands of supplements as needed

6

Evaluate alternative therapies: HBOT, neurofeedback, etc.

7

Continue education: Conferences, webinars and others

8

Keep your marriage and family intact.

9

LAST RESORT: Consider pharmacology when medical efforts are not progressing.

This document is a “sample” checklist to consider in planning intervention for a child affected by autism. Please note, the order and action items will vary by child.

This is only a sample. Please consult with your child’s development and medical team for what is appropriate for their individual needs.

Autism Journey Dietary Intervention

1

GFCFSF Basics: Remove all gluten, casein and soy

2

Supplements: Don't forget calcium. 600-1200mg per day

3

Allergies: Run IgG and IgE food allergy blood tests. Remove offenders.

4

Remove basic toxins: Nitrates, MSG, aspartame, HFCS, fluoride, arsenic

5

Yeast: Learn what yeast looks like, and what causes it.

6

Carb Junkie: Learn what carbs are, adjust diet

7

Food Labels: Learn how to read food labels

8

Go Organic: 9 is fine! Remove colors and preservatives. Join a CSA.

9

Phenols and Salicylates: Learn what they are, watch for reactions

10

Remove Other Toxins: Aluminum, chlorine, BPA, fluoride

11

Cooking and Storage: Remove teflon, aluminum, and plastics

12

Costs: On-A-Budget, cook from scratch, buy and cook in bulk

13

GFCFSF not enough?

14

SCD-CF: Redo allergy tests first. Remember supplements.

15

LOD: Research oxalates and run 24-hour urine oxalate test.

16

BED: Low carb, cultured foods, fats, and probiotics.

Autism Journey Medical Interventions

1

Autism Diagnosis: Consider obtaining a medical diagnosis, independent of the school.

2

Genetic testing: MTHFR, Fragile X, Rett Syndrome, Wilson's Disease, mitochondrial dysfunction, Chiari1, PON1 but only if insurance pays.

3

Baseline testing: CDSA, lipids, amino acids, IgG and IgE food an environmental allergies, OAT, comprehensive metabolic panel, CBC, RBC, zinc, 25-hydrozy vit D, blood and urnine immune panel, hearing, celiac, thyroid panel

4

Neurological and Seizures: Non-sedated 24-hour EEG, MRI

5

GFCFSF Diet: Remove all gluten, casein and soy.

6

Find a qualified and experienced doctor to identify and address any underlying medical issues your child may have.

7

Advanced testing: Glutathione: CDSA, TNFa, C-Reactive protein, urinary porphryins, pterins, endocrine, autoimmune, ASA titers, anti DNAse antibodies, copper/zinc ratio, oxidative stress, methylation, metabolic diseases, myelin, basic protein, viral titers, testosterone, ammonia, oxalates

8

Gastro: Symptoms: Undigested food, chronic or alternating diarrhea and/or constipation, posturing, bloated belly. Testing: Colonoscopy, endoscopy, pillcam, CDSA

9

Supplements: Multivitamins, minerals, zinc, antioxidants, D3, sulphation, B6, magnesium, EFA, amino acids, glutathione, B12, calcium, immune boosters, TMG/DMG, antifungals, probiotics, enzymes, GABA, melatonin

10

Recurring Yeast: Test with CDSA, behavioral, medical symptoms. Treat with low-sugar diet, probiotics, colostrum, medications (diflucan, nizoral, nystatin), GSE, caprylic acid, garlic, oregano oil

11

Toxins: Reduce exposure to arsenic, lead, cadmium, organophosphate pesticides, tobacco, fluoride, ammonia, BPA, chlorine, mercury. Check your water, personal care products, food and bedding.

12

Repeat Testing: CDSA, IgG food, CMP, CBC, RBC. Have your regular doctor order these under insurance!

13

Co-morbid issues: PICA - mineral deficiency testing. Hearing deficiency - bacterial and mineral levels, Berard AIT, noiseblocker headphones. Sleep - test for reflux, diet, check bacteria, give melatonin

14

Other: If you get pregnant again follow the safety guidelines - diet, no acetaminophen, no vaccines, for you or your baby. Get your child's gut in the best shape you can before puberty.

15

What is it?: Regression is a normal part of the healing process. Some kids lose a skill while gaining other bigger skills. Keeping a journal will help find out what went wrong. More testing may be needed.

16

Relaxation and Fitness: Exercise is crucial for ASD children. Adapted yoga, running/walking, gym exercise, sensory input, and tai chi for coordination and muscle tone. Get them moving every day!

17

Functional Medicine: FM is personalized medicine that deals with primary prevention and underlying causes instead of symptoms for serious chronic disease.

Autism Journey Living In A Toxic World

1

Ingested: FOOD. No pesticides, aluminum, MSG, mercury, colors, nitrates, arsenic, preservatives. WATER: No fluoride, BPA, lead, rocketfuel, pH, PCB, PCPs, parasites, arsenic

2

PERSONAL CARE: Sunscreen, makeup, lotion, medications, shampoo, soaps, antiperspirant. CLOTHES AND BEDDING: No fire retardants, GoreTex, light-up sneakers, foam matresses. PAPER PRODUCTS: Diapers, baby wipes, tampons, toilet paper, paper towels

3

HOUSEHOLD CLEANERS: All-purpose cleaners, laundry detergent, dishwashing soap. COOKING AND STORAGE: No teflon, plastic or aluminum. Cook in cast iron or stainless steel. Store in glass. FLOORING: Avoid Stainmaster and Scotchguard. Use baking soda and water to clean carpets.

Autism Journey Educational

1

Child enters school system: via Child Find, EI, RC, parent referral or regular enrollment.

2

Child referred to Special Education department for evaluations in ALL areas of suspected delay. Disagree with assessment? Seek independent evaluation.

3

Parent must receive evaluation reports prior to IEP meeting.

4

IEP Meeting: Never go alone, always tape record, never sign IEP at first meeting.

5

Discuss evaluations: Discuss your child's current educational levels

6

Discuss the developmentally appropriate steps to get your child from where he is to where he should be compared to his peers.

7

Create measurable goals: Write only goals that are able to be measured, never vague. Who measures, how and when? Goals drive placement and services. Make sure there is at least one for every area of need.

8

Placement Offer: Goals before placement. Placements are to be individualized to your child's needs, NOT their available programs. Does the placement offer meet LRE? No? Reject offer. Yes? On to services.

9

Services Offers: Based on goals, document level, frequency, setting and duration of each service.

10

Discuss what accommodations your child will need to fully participate in the placement and services agreed to. Put it in writing!

11

Communication: Discuss and document parent-staff communication in detail. Frequency, data. Don't settle for "a good day".

12

Don't agree with placement or services offers? Don't sign IEP!

13

Hire a lawyer or advocate.

14

Some schools will buckle when you threaten to file due process, some won't. Be prepared to go the distance.

15

File due process

16

Consider private placement options

17

Follow through: Have quarterly reviews of your child's progress on the IEP goals. If not meeting benchmarks, call a new meeting.

Autism Journey Finance

1

Early Intervention (Part B), Ages 0-3: Does not require a diagnosis, just delay. Will bill private health insurance and pick up any remaining fees. Covers OT, PT, ST and behavioral and developmental interventions.

2

Federal Programs (SSI, Food Stamps/SNAP): You must qualify for these programs on income and disability. If you do qualify, you can get up to $735 cash per month for SSI and up to $649 a month (for a family of 4) of Food Stamps.

3

Grants and Scholarships: There are more than 25 national grants, and many more local grant programs available for children with ASD for various funding. Google search "autism scholarship" or "autism grant" and your state.

4

Medicaid (Medwaivers): Medicaid will pay for medically necessary treatments like doctors, dentists, vision, prescriptions, lab tests, OT, speech, behavioral, PT, diapers but is income dependent. Waiver programs WAIVE the parent's income so that the disabled child qualifies.

5

Other State Funding: Most every state has another program for children with disabilities. Google search "developmental disabilities funding" and the name of your state.

6

Private Health Insurance: Read the TACA insurance booklet for complete details. For evaluations and treatments that would be considered Standard of Care by the American Academy of Pediatrics, use the 299.00 IDC-9 Diagnostic Code. For evaluations and treatments that are biomedical in nature, use the diagnostic code related to the specific medical condition.

7

Regional Centers (CA only): Each RC can determine what services they fund. Generally, the RCs fund ABA, respite, diapers, and day care subsidy. Children with a "substantial" developmental disability qualify for RC services. July 2009 cuts mean no "non-medical" therapies education services.

8

School District (Part C), Ages 3-22: Funding through the Department of Education. Free to families. Pays for all educational therapies, interventions and related services that are written into IEP.

9

Budget Tips: There are many ways to save money on your journey. Read all of our "Autism on a Budget" series articles and save where you can, so that when you must pay out of pocket, you can afford it.

10

Tax Deductions: All medical appointment travel and costs, all disability-related reading materials, all therapists and therapy equipment, special diet foods, and much more, can be deducted on your taxes. Keep all of your receipts!

Autism Journey Home Life

1

Marriage: Moms to Dads: Get involved, stay involved. Acknowledge her work, listen.

2

Marriage: For Dads: Define roles, make a plan, realize men act and react differently

3

Marriage: No ego parenting. Lead, follow or get out of the way. Make time away from autism.

4

Siblings: Make special time for other kids

5

Siblings: Siblings should not be raised to be caregivers.

6

Siblings: Don't expend all resources on AD kids, leaving nothing for siblings.

7

Home: Physical safety, locks, fences.

8

Home: Durable, easy to clean furniture and décor.

9

Home: Use non-toxic cleaners and furnishings.

10

Extended Family: Prep them for proper expectations, how to relate

11

Extended Family: Holidays, travel and gatherings

12

Extended Family: Gifts go into Special Needs Trust

13

Getting Organized: Use a journal to track progress

14

Getting Organized: Get and scan all documents before they are destroyed

15

Getting Organized: Get one credit card just for autism related purchases to help track and for taxes

16

Divorce: Build a Special Needs Trust and wills

17

Divorce: Plan for the worst, hope for the best. Put it all in writing.

18

Divorce: Decide who decides - educational and medical

Autism Journey Adults

1

Guardianship: A general guardianship or conservatorship gives someone power to make decisions about medical care, finances, living situations and more. Some states allow for a "limited" guardian or conservator of a person with ASD.

2

Government Programs: All men must apply for the draft, regardless of ASD at the age of 18. SSI and Medicaid are national programs to cover medical care and financial help.

3

Legal: Wills, Powers of Attorney, Special Needs Trusts and ABLE Accounts all require a lawyer but are necessary for many adults with ASD. Disability Rights is a national organization providing free/low-cost legal help.

4

College: There are companies who can assist you in finding grants, scholarships and appropriate placements in schools, as well as offering ongoing tutoring and mentoring services throughout the school year.

5

Housing: A disabled adult can live on their own, if able, in houses or apartments, or if they are unable to care for themselves with limited help, they can live in residential facilities, such as adult foster care, group homes, farms and institutions.

6

Other: Fully dependent ASD adults can stay on a parent's private health insurance indefinitely. Vocational Rehabilitation can pay for job training, job matching, assistive tech, college or certificate programs, independent living training and more.

Autism Journey Teens

1

IDEA law requires transition planning to begin when a student turns 16 years old. With the IEP team, the student and parents develop a plan of action for reaching post-secondary goals related to further education, employment, and independent living.

2

Medical/Health: The GFCFSF Diet and biomedical treatments work regardless of age by starting them with a teen can present different challenges. Keep your child active and engaged with extracurricular activities.

3

Skills: Social skills and life skills must be taught to teens with ASD. Volunteering and chores are a great way to teach skills. Safety is also a key skill that must be addressed with teens.

4

Puberty: Puberty can bring many changes to a child and family. Anxiety, hormonal and body changes, aggression, self esteem, self-advocacy, sexuality and seizures are all common issues in puberty.

5

College and Employment: There are many college programs available for kids with ASD allowing for appropriate accommodations. Vocational Rehabilitation is a national program to help test, train and pay for college and supported employment.

6

Other: Siblings cannot be forgotten and can be very beneficial in teen years. Driving evaluations and lessons can make or break this step in independence. There are many books on and for Teens and Adults with ASD.