A Journey So Far…..

A Parent’s Perspective
A 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 2
 All evaluation reports demonstrated Jeff was
operating at 3-6 months skill sets – no
speech
 Pediatrician misstep & delays in diagnosis
 First 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 tests
 Hypothesis created, questions identified
 Search for a doctor who would listen
 Started 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 Profile
Complete 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 week
 Speech - 5 hours a week
 OT - 1 hour a week
 Started afternoons 2x’s a week preschool w/
an aide
 Biomedical
 Supplements: continued with basics – add
transdermal products like glutathione
 Medical tests and more medical tests
Hypothesis 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 done
 Comprehensive 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 week
 Started 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 week
 Repeated typical Kindergarten w/ Aide
 Speech 4 hours/OT 2 hours a week
• Biomedical:
 Supplements: did supp vacations &
profile to make sure formulation worked
 Medical: 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/ Aide
 Speech 4 hours/OT 2 hours a week
• Biomedical:
 Supplements: did supp vacations &
profile to make sure formulation worked
 Medical: 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 week
Now in typical 2nd grade w/ Aide
Speech 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 do
 13-15 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 based
 Drills move forward / no rut zone
 What 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 Diet
 Clean/organic diet
 Eliminate all dyes, additives, preservatives
 Good 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
Exchange Communication
System – (PECS)
• www.pecs.com
• To create communication
• To help organize schedules
and eliminate frustration
• Consider augmentative
communication device
evaluation
www.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 each 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
yourself
 If you are healthy, you can help –
if you are unhealthy, you NEED help!
Research
• Always be reading – alternating:
 Education
 Brain & autism research
 Biomedical 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 them
 Share 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 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 paperwork
Binders are your friends
Two “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 AND
We 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