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 Johns Autism news list. Send an email with text of "Subscribe autism" to listserv@maelstrom.stjohns.edu
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 judgment. Its OK 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 http://www.egroups.com
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,
Paul Watson pwatson@utdallas.edu Sr. Buyer UTD The Univ. of Texas at Dallas. President of ASCC Autism Society of Collin County http://www.autism-ascc.org
Author: Paul Watson
Source: SMTP:pwatson@UTDALLAS.EDU
