Sunday, December 6, 2009

Diagnosis: Autism Spectrum Disorder (My advice to parents of the newly diagnosed)

First, allow yourself to grieve.  For you AND your child.  You did not "sign up" for this and neither did your child.  It is NOT your "fault".  Do not search for blame, but for hope and recovery.   Your hopes and dreams for your child will change.  You have a long, arduous, but rewarding journey ahead of you.  Grieve, but prepare for that journey.  EVERY intervention is going to take time,dedication, and probably some funds.  Do not invest in a program that you will not be able to follow through with, personally.  Most interventions will take at least 1-2 years or more, depending on the degree of autism your child has.  There is NO "quick and easy fix".  Anyone who tells you there is, is someone for whom you need to exercise caution.

Do not keep the diagnosis a secret from family and friends.  They will find out sooner or later--it doesn't get better overnight.  The sooner people know, the easier for you.  You will need their support.  Find at least 1 or 2 trusted people whom you can use as a sounding board.  Ask them to fill this role--to play devil's advocate, but to also support you in your decisions regarding your child, even if they don't agree.  YOU know your child best.  Remember that there is no ONE "cure".  Go to an ASD Support group in your area to learn from parents who have been doing this awhile.

ALWAYS do only one intervention/treatment at a time, so you will know what is working and what isn't.Eventually, you will find that adding one thing to another is helpful, but give each therapy a chance to work on its own, so YOU know how to best help your child.

If you feel vaccines had a part in your child's autism, I, personally,would not vaccinate again.  If you choose to vaccinate, find a doctor who will give vaccinations singly, instead of 3 or 4 different vaccinations in one shot. 

Next, I would see if diet has anything to do with your child's autism.  This is the easiest and least expensive intervention/treatment option.   I would first eliminate Gluten.  Do this for 6 weeks.  If you see no dramatic change, (i.e. increased eye contact, more babbling or talking, more initiation, less stimming) introduce it back into the diet.  After two weeks,  eliminate Casein.  Again, if there is no dramatic change after 6 weeks, the diet may not be the culprit. Do not be discouraged--yes there are accounts of kids whose autism gets "cured" (I prefer to say, "put in remission") with diet changes.  (I have only witnessed one child, in my practice, who dramatically improved,(i.e. much more initiation, eye contact, and attempts to communicate, both verbally and gesturally, but was far from "cured".)  If the diet changes do not bring you to where you want to be, I would next implement Floortime.

Obviously, I am a definite proponent of the PLAY (Play and Language for Autistic Youth) Project.  It is inexpensive (i.e 3-4K a year compared to 10-20K for other interventions) and I have seen AMAZING results in young children (under age 7).   I have also seen good results in older children, but they don't happen as quickly as they do in the younger children and the Project does not target older children.  It is an early intervention tool, but the principles of it work for any aged child.   If you cannot find the 20-30 hours a week needed to play, try to train family and friends.  Using a PLAY tutor is also an option, but adds to the cost--although most PLAY tutors are less than $20 an hour.
If PLAY does not bring your child to a level that you are satisfied with, you may then want to try ABA--(Applied Behavioral Analysis) or RDI (Relationship Development Intervention).  I believe both of these are more appropriate for children over the age of 7, who have had few years of Floortime.  Both are intense, expensive,(not usually covered by insurance) and "puts upon" the child i.e. not following the child's lead or intentions.  When a child's intentions are ignored, early on, you WILL see behavioral problems.  Remember:  BEHAVIOR=COMMUNICATION.  Once a child is 6 or 7, they can be "put upon" more easily, especially if they have had the Floortime background.  We are seeing more ABA therapists trained in Floortime and that helps, significantly.

Another option is homeopathic remedies.   Find a DAN (Defeat Autism Now) doctor in your area or an M.D./D.O., who is also a homeopath.  Parents have reported improvement with NAET, biofeedback,acupuncture,chiropractors, sensory integration, and other alternative practices.  However, many of these are not covered by insurance so it is imperative that you find professionals familiar with autism, who have had success that they can document.  There ARE charlatans who will take advantage of your desperation.  This is when you need to use your "sounding board".   I am currently in contact with a NAET practitioner who is treating some children on the Spectrum, for free, and I am interested in seeing how they do--again this is a long term intervention.  I will report back on this when she has had at least a year with them.

Most children on the spectrum will also need occupational and speech therapy.  Some will need physical therapy.  A lot of OT and speech can be incorporated into a PLAY session.  Many of these therapies ARE covered by insurance, depending on your insurance company.

If your child is 2 1/2 or older, they may be eligible for an Early On intervention with your local school district.  This is where they may get some OT, PT or speech, if needed.  In Michigan, we have the Children's Waiver, which allows parents to get respite care of THEIR choice and occasionally other therapies.

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PLAYing with Passion

Autism, Floortime, PLAY Project