My Revised Autism faq sheet

[Guest guest]

01-08-2001

So, your kid has Autism?

This is a fact sheet for parents or friends who just found out they have a

child or know of a child or adult with Autism or Autism-like issues.

I have a 14 year old daughter with Autism. These are a few items I have

learned from my journey, other parents, professionals and the Internet:

1. For discussions on Autism get on the Saint s Autism news list. Send

an email with text of " Subscribe autism " to listserv@...

2. Sign up for free evaluation and services, age 0-24, from your local

school district and state special education department and early childhood

intervention http://www.tea.state.tx.us/special.ed

http://www.health.state.ny.us/nysdoh/child/index.htm

3. Consider getting extra evaluation and services from Easter Seals

http://www.easter-seals.org they charge on a sliding scale based on income.

The state has to provide appropriate but not " all " or " best " services.

4. Learn the law and your child's rights http://www.edlaw.net

5. Read everything you can and find out what works and does not work from

others who have done it. See the links at http://www.autism.org/links.html

http://www.isn.net/~jypsy/autilink.htm http://www.autism-ascc.org

http://www.futurehorizons-autism.com " on line Autism book store "

http://trainland.tripod.com " Beyond Autism "

6. Do only one new treatment, drug, or supplement at a time and keep

records on what is causing changes. Then, be sure to give each approach

plenty of time, several weeks, to work before passing judgement. Its OK to

to try things when you are sure they do no harm to your child and family

emotionally, financially, or physically. Its also OK to change your mind

about programs, treatments or theories. It looks like most things only

help a percentage of the individuals with Autism. What works for my kid

might not work for you.

7. Join a local Autism group in your area, talk to and meet local

parents and professionals. http://www.autism.org/links.html

find or start a local Autism email discussion list

8. Watch out for magic cure-alls and snake oil salesmen, for advice

see http://www.autism.com/ari

9. Take the best from all the various Autism groups and form the best

program for your kid. There is a lot of passionate debate and criticism

between camps of treatments and organizations.

10. Watch out for the " Warrior Parent " syndrome where you go against the

school district and professionals as a parent to war. Work on win-win

collaborative, team building with all people who interface with your kid,

they will be the best allies, http://www.icsi.net/~stlevine/fault.html

Volunteer with the PTA, help out at school, church, where ever you can.

Once they get to know you the return in favors and help for you child will

be more than you put in.

11. Do not spend all your time and effort on the kid with Autism at the

expense of your marriage, family and friends. The best treatment for your

kid is a happy, healthy, and loving family to support them.

12. There is not a doctor you can go to who will manage " all " your kids

issues. You, will have to become your kids expert and case manager. Many

of the treatments are non-standard and based on trial and error not double

blind published peer reviewed scientific studies. Some doctors scoff at

some of the diets and treatments that work because its often contrary to

conventional medical wisdom. Sometimes you, the non doctor parent, will

have to educate the experienced degreed professional. Strongly consider

taking the time to locate and work with physicians who are experienced

with your child's specific neurological disorder and who also network with

other doctors in this field. http://www.autism.com/ari/danlist.html

13. There is active research on a suggested link between the MMR vaccine

and Autism. See http://osiris.sunderland.ac.uk/autism/vaccine.htm

http://www.909shot.com/autismto.htm http://vaccineinfo.net

14. There are 4 main categories of treatments for Autism:

Biological - with diet, vitamin, herbal and nutritional supplements See

http://www.antibodyassay.com , A new study of Vitamin A

http://home.att.net/~pediatricaac/main.html Look at gluten and casein free

diets http://www.gfcfdiet.com ,acidophilus, super vitamins, herbal immune

boosters, DMG, Epsom salt baths, melatonin, Monolaurin, probiotics like

Culturelle and Primal Defense and Essential Fatty Acids.

http://www.puritanspride.com or a local health food store.

Heavy metal poisoning http://www.stas.net/1/mercury

Therapies - such as auditory training http://www.autism.com/ari/us.html

sensory integration http://home.earthlink.net/~sensoryint speech therapy

http://www.mrtc.org/~duffy/yaack, occupational therapy and regular daily

physical exercise, adults and older kids say this helps a lot.

Educational programs - such as ABA http://www.feat.org

TEACCH http://www.unc.edu/depts/teacch

social stories http://www.udel.edu/bkirby/asperger/socialcarolgray.html

sign language, picture systems, augmentative communication devices.

Treatment programs http://www.nacd.org http://www.son-rise.org

Drugs - look at Prozac, Zoloft, Tenex, Buspirone, Depakote, Resperdal,

Secretin, Cloradine, see

http://curry.edschool.virginia.edu/go/cise/ose/information/secretin.html

http://www.rxlist.com http://www.medscape.com

http://www.ncbi.nlm.nih.gov/pubmed Max Wiznitzer MD O/A, Assoc. Prof.

http://www.uhrainbow.com/neurol/wiznitzer.htm expert on drugs and autism

Our kids respond to far less amounts of these drugs than are used on the

" normal population " . Autism is a neurological disorder affecting the

senses and is not a mental illness. We have met 40 year old adults who

spent years on mental ward treatments and heavy drugs only to find out

they were not crazy just a little weird because of Autism. Most people do

well with non drug approaches to reduce the over stimulation they receive

from their senses being on full blast all the time

http://www.aspergersdigest.com

And finally, understand, your kid will improve and grow over time. You

will go through the grieving process for the death of the child you had

dreamed of raising. Raising a child with Autism can be a very different

path than you had planned. It is OK to feel grief, guilt, depression, joy,

anger, frustration and job burn out. You can not avoid it, understand and

work through it. We are all here to help, laugh, cry and rejoice with you.

Its not an easy job, some think God picked us because we had the special

talents these kids need. For me, Lora, my daughter, is the best thing that

ever happened. She has made me more caring, considerate and passionate

about life. I still remember the day I came home from work when Lora was

about 6 and she looked up and said " hello daddy " , her first sentence.

Regards,

pwatson@... Sr. Buyer UTD The Univ. of Texas at Dallas

President of ASCC Autism Society of Collin County http://www.autism-ascc.org