A Journey So Far….. A Parent’s PerspectiveA detailed parent’s journey of Autism, biomedical & traditional therapies

By Lisa Ackerman – Jeff’s mom

Autism One 2006

Agenda• Why I am here• Jeff’s History – year by year• Interventions used & details• Lessons Learned• How to get started• Where to go for help• Best resources• More Video of Jeff• Close

Why I am here• It’s simple really

Disclaimer• Just a mom – not a doctor – this

presentation should not be used as medical advice

• Always use a doctor before pursuing any intervention

• Always remember, what works for one child does not work for every child with autism spectrum disorders

• We have little support, little knowledge, little data on what works – we are the leaders forging the path to tomorrows answers

Jeff History • At 1.5 years – before autism• At 2 years – after autism• Treatment Review: 1 year in• Treatment Review: 2 years in• Treatment Review: 3 years in• Treatment Review: 4 years in• Treatment Review: 5 years in• Treatment Review: 6 years in• Where we are going

BEFORE: At 1.5 years• Typical child• Healthy, typical gestation &

birth• All milestones met and starting

to talk • No concerns / no issues• Then…

AFTER: At 2 years• Lost all words• Started to regress in all skills. Assessments at 2.5 yrs showed he was at 3-6 month level• Frequent diarrhea• Selective eating – from a typical 2 year

old’s palate to selecting down to six foods • Irregular dilating eye pupils• Sleep cycles changed (i.e., no sleep)• Rash city all over the body• Into his world and away from ours

At 2 years continued:Note: We introduced milk at 2All evaluation reports demonstrated Jeff

was operating at 3-6 months skill sets – no speech

Pediatrician misstep & delays in diagnosisFirst three doctors provided no hope, no

answers, a possible look at Jeff’s future (seen 14 doctors total since).

Diagnosed: September 30, 1999 with autism, and January 15, 2000 with apraxia (both severe) – follow up diagnosis December 2003 – Auditory processing disorder

At 2 years continued – ATEC & Medical• ATEC Score (

http://autism.com/atec/)106

• Medical tests done – none (doctors did not think about medical)

• All testing done was: behavior-based, psychological, OT, and speech.

At 3 Years• Interventions started (after 2-4

months on waiting lists)Behavioral:

ABA – in home 15 hours a week (worked up to 25)

Speech – in center then in home – 5 hours a week

Biomedical:Supplements: started with the basics: C, A,

EFA’s, B’s, Calcium, & Zinc Medical tests and more medical testsHypothesis created, questions identifiedSearch for a doctor who would listenStarted Gluten free / Casein free (GFCF) diet

and allergy elimination

At 3 years continued – ATEC & Medical• ATEC Score (

http://autism.com/atec/)75

• Medical tests done:IgG, IgA, IgE ProfileComplete Blood profile (RBC, WBC),

Urinary Peptides, Organic Acid, Amino Acid Panel, Yeast Culture, Hair Toxic elements, comprehensive stool analysis, and Coagulation study

At 4 years• Interventions started

Behavioral:ABA – in home 30 hours a weekSpeech - 5 hours a week OT - 1 hour a weekStarted afternoons 2x’s a week preschool w/

an aideBiomedical

Supplements: continued with basics – add transdermal products like glutathione

Medical tests and more medical testsHypothesis continually tested – more questions being answered – key doctor identified

Identified key allergens: soy, corn, eggs, dyes, yeast

At 4 years continued – ATEC & Medical

• ATEC Score (http://autism.com/atec/)

55• Did augmentative communication

(AC) evaluation and obtained a Dynamyte (www.dynavoxsys.com) Important note: Jeff started talking at

4.5 years (8 months after using the AC device)

• Medical tests doneComprehensive stool test, essential

fatty acids, RBC and toxic metals

At 5 Years• Behavioral:

ABA in home 40 hours a week (when not in school)

Speech in home 5 hours OT 2 hours a weekStarted Speech delay Kindergarten w/

aide 25 hours a week• Biomedical:

Supplements: switched to mostly liquid supplements (absorption)

Medical: tried transdermal – went to IV Glutathione, transdermal chelator TTFD, Diflucan & Ketakonazole to treat yeast, and Tomatis first round in December 2002

At 5 years continued –ATEC & Medical

• ATEC Score (http://autism.com/atec/)

35• Medical tests done:

Cysteine plasma & sulfur (both low), comprehensive metabolic, RBC/WBC, CBC & Auto differential, Zinc serum

• Note: huge gross motor skill jump with scooter, bars, bike & T-ball

At 5-6 years - • Behavioral:

ABA in home 15 hours a weekRepeated typical Kindergarten w/ AideSpeech 4 hours/OT 2 hours a week

• Biomedical:Supplements: did supp vacations &

profile to make sure formulation workedMedical: continue IV glutathione every 6

weeks, more Ketakonazole (3 treatments), EDTA oral chelator, two more follow-up rounds of Tomatis, and tried IV Secretin (Secreflow)

At 5-6 years – ATEC & Medical

• ATEC Score (http://autism.com/atec/)

25• Medical tests done:

Essential Fatty Acids & Metabolic RBC/WBC, Vitamin Profile, CBC & Auto differential, Comprehensive Metabolic, RBC & Toxic metals – most important finding: metabolic results are normalizing

• Note: school a great experience!

At 6-7 years - • Behavioral:

ABA in home 15 hours a week In typical First grade w/ AideSpeech 4 hours/OT 2 hours a week

• Biomedical:Supplements: did supp vacations &

profile to make sure formulation workedMedical: continue IV glutathione every 6

weeks, more Ketakonazole (3 treatments), more chelation TD-DMPS, and added MB-12 shots

At 6-7 years• ATEC Score (http://autism.com/atec/)

10 (still – more work to be done!)• Medical tests done:

Vitamin Profile, Comprehensive Metabolic, RBC/WBC, Vitamin & Toxic metals – most important finding: metabolic results are normalizing – also Geonomics testing

• Added intervention: Auditory trainer at school More info on auditory trainers

http://www.telex.com/education/products.nsf/pages/ProductType=Auditory+Trainer+Systems

Device used was an FM Auditory trainer by Phonak. It is the Micro Ear Auditory trainer & X2T transmitter from www.phonak.com

• Fast Forword for reading, language & processing helped a great deal www.fastforword.com

• Also did Interactive Metranome – www.interactivemetranome.com

At 7-8 Years• Behavioral:

ABA in home 15 hours a weekNow in typical 2nd grade w/ AideSpeech 3 hours/OT 1 hours a

week• Biomedical:

Supplements: nebulized & oral glutathione, up’d MB-12 prescription, added HBOT

At 7-8 years• ATEC Score

(http://autism.com/atec/)10 (still – more work to be

done!)• Medical tests done:

Vitamin Profile, Comprehensive Metabolic, RBC/WBC, Vitamin & Toxic metals – new allergy panel – new viral panel

Next steps• Biomedical: Look for answers in

existing diseases & medical conditions that help:Stroke Inflammation

• Traditional therapies: Continue what we are doing in:Aide in school – in phase 4 (of 5)Speech – as much as possible in

everything we do13-15 hours of home / mostly theory of

mind, advanced / abstract concepts & curriculum pre loading

Social skills focus

Treatment Review - DETAILS

•Behavioral•Biomedical•Social•Family•Research

Interventions – Behavioral• ANYTHING ONE-ON-ONE!!

ABA, VBA, RDI, PRT (alphabet soup) Important life skills and age appropriate

skills must be evaluated during therapy life!

Behaviorally basedDrills move forward / no rut zoneWhat works for one does not work for all

• Others to consider: Floortime, TEACCH, Sonrise, social skills, play therapies,

RDI – it’s all about a good team (a supervisor and therapists!)

Interventions - Biomedical• Supplementation with an eye to test

results (with minimal annual testing)• Secretin (IV and transdermal)• Chelation: DMSA, TTFD, EDTA, DMPS

(have done oral, topical variations only)

• Sulphation: IV & Transdermal Glutathione

• Tomatis (four rounds)• Yeast treatments: Diflucan,

Ketakonazole (Year 2-3 provided between 3-6 a year now on maintenance w/ probiotics & Lauricidin)

• HBOT – 40 “dives” 1.3 to 1.5 ATA’s with 100% oxygen – in patient

Interventions – Dietary Do not discount this treatment!!

GF CF DietClean/organic diet

Eliminate all dyes, additives, preservativesGood rule: remove anything with more than three syllables &

especially unpronounceable words!

Phenol removal (Feingold diet)Common GFCF diet allergy removal: Soy, corn,

eggs, yeast & dyes - especially “natural flavors”Rotation diet: to prevent future allergies

• Remember the following: Food is not love Be ready to lose a food for three weeks ANYTIME

Interventions – Picture Exchange Communication System – (PECS)• www.pecs.com• To create communication• To help organize schedules

and eliminate frustration • Consider augmentative

communication device evaluationwww.dynavoxsys.com

Interventions - Social Skills• ASD kids need to learn social

skills differently than typical kidlets

• Frequent play dates with the ultimate friend

• Facilitated with an Experienced aide!

• Build on the activities they love

• Make it fun!

Family• Your family:

A diagnosis affects eacheach family member Discuss the issues as a team to problem solve

and share in the healing process Share with other families like yours (outings &

gatherings)

• YOU: Grieve then move forward – times a wasting! Remember - there are other people in your life

Spouse, children, siblings, parents, friends Stay healthy / stay positive / do little things for

yourselfIf you are healthy, you can help –

if you are unhealthy, you NEED help!

Research• Always be reading – alternating:

EducationBrain & autism researchBiomedical treatments

• Organize the materials relevant to your child’s area of need Involve the experts working with you

son – get recommendations & share information

• Learn from other families what works for themShare the load – assign tasks & meet to

disseminate information

Lessons Learned – part I• Hire an attorney or advocate early in the process

(who knows your district/early start program and has a track record)

• Start the in home program / or one-on-one intervention immediately – you can always change direction Step one: Get on all waiting lists Step two: Call all references provided Step three: talk to as many parents as possible

• Find a doctor that is a long-term partner Get on waiting lists

• Do the GF CF Diet! Trial 6-12 months Compounding pharmacy for meds, organic / clean diet

• Independent outside evaluations on: Behavior, child psychologist / neuropsych,

speech, OT/PT, and other specialists Do testing annually

Lessons learned – part II• Pace yourself for your child’s sake – these are fragile

children Go slow, follow doctors orders Document each step! Have a plan when and why to try each intervention

AND WHEN TO STOP!!• Surround yourself with forward-thinking, positive

people • ASK questions – understand the premise –

beginning, middle and end - of every treatment plan• Become a quasi expert on: medical, diet, behaviors,

speech, OT, research, documentation, or find someone in each group

• If a provider does not exist in your area – GET CREATIVE! Go to conferences & meet them there Travel where they are and stay with family/friends

(make a vacation) Grow them!

• Set goals: Visualize and plan the future

Where to go for help• California people – go to TACA

meetings, and there are more details on each slide topic at: www.tacanow.com

• ARI – www.autism.com/ari• Yahoo Groups – online support

(be wary of online advice – always check with a doctor!)

• Find a doctor – resources used: www.autism.com/ari CLICK ON DAN!

Best web resources• There are over 19,000,000 web sites – (key word Autism on

www.google.com) I have cataloged over 500 by category • Here are my favorites: (of course www.tacanow.org !)

Dietary: www.gfcfdiet.com Supplements: www.kirkmanlabs.com Finding a doctor: DAN! www.autism.com/ari Generic news on autism:

http://autism.about.com/health/autism Mercury & Autism: www.generationrescue.org Special Education law: http://www.wrightslaw.com (lots

here!) Speech issues: www.apraxia-kids.com

• Best email newsletter: Shafer Autism report – to subscribe: subscribe@doitnow.com

• Use YAHOO GROUPSYAHOO GROUPS for specific topics (Like Autism Southern California for general questions, HBOTforAutism for HBOT, GFCFKids for the diet, etc.) http://groups.yahoo.com/

How to get started• Autism is a marathon, not a

sprint!• Although there is urgency in the

desire to save a child – know that any accomplishments take time

• Never give up hope

Getting started – part II• Be, stay, live organized or die

by paperworkBinders are your friendsTwo “to do” lists

Short – 2-3 items accomplishable in 1-2 weeks

Long – the list you pull from when the short list is done

What is important? What is not?

Where we are going• Achieve Jeff’s true potential –

final destination unknown • He is not a diagnosis – he is a

child with a promising future ANDWe will never give up

• Always looking for new resources to add to the puzzle picture

• Goal: recovery – if not, Back pocket goal: independence

More Video of Jeff

Close• Questions & Answers