My daughter was diagnosed with autism - looking for resources

[joanna47]

We had another meeting with the special education department at my daugther Elanor's school a few weeks ago (she just turned 6 and is in kindergarten). She's been lagging behind in almost every subject, and they've been testing her for the last few weeks. The meeting was to go over the results of their tests. The final diagnosis, given her global delays and other signs, was autism (mild to moderate). Several acquaintances on another message board asked me if her diagnosis was PDD-NOS, and I'm not sure. All her testing paperwork and her IEP just say "autism (mild to moderate)." Is there a specific place on her testing results/IEP that I should look at? Should I ask the school psychologist? Also, is it necessary to get a medical diagnosis of autism? If so, would I need to get a referral from our family doctor? He's a GP, not a pediatrician.

The good news is that they said she was very bright and lovable, and kept reiterating what a joy she was to work with. They're confident that she will make excellent progress once she starts special ed classes (she will be pulled from her regular classroom for 90 min/day for academic assistance and speech therapy, and she'll also be getting some physical and occupational therapy, about 30 min/week).

Now, a request: I know next to nothing about autism and I'm looking for resources. Specifically, if there are any Catholic resources, I'd love to know about them. I feel much more in control of a situation if I've educated myself about it. I went to the library this past weekend and I got Dr. Sears' The Autism Book and one by Nancy Wiseman as well. I've read the Sears book and now my head is spinning, so I'm taking a few days before I read the other one. 

[Stephenie]

autismspeaks.org will be able to guide you to local resources. 

It's up to you if you want to seek a medical diagnosis. It could be useful if you feel she needs more services than what the school's providing, more st, ot, aba, meds, etc. An educational diagnosis won't help you any with insurance as far as I understand. The referral depends on your insurance. I have a PPO plan, so I was able to just call an in-network developmental pediatrician and get an appointment. Most have long waiting lists, but you have services in place at school so you have a good start while you wait. If you need a referral, your GP should be fine. 

As for if it is PDD-NOS, the educational diagnosis may not include where she is on the spectrum, I am not sure how the schools work it. There is also a push to diagnose all of it as autism. My son's official, on paper diagnosis is autism even though the doctor said it is surely Asperger's. 

 I know how overwhelming it is. We just got our son's diagnosis less than a month ago and my head is still spinning most days.

[Emmeline II]

Personally, I would want an evaluation by someone I picked, who works for me. Whether or not you need a referral depends on the provider and your insurance. Also, a school diagnosis is focused on what she needs at school, not what may benefit her outside of school.

[momto2monkey]

We are going thru some of the same things with my 6.5 K DS. We have yet to see the school psyh. but have seen the peditrician and will be seeing developmental ped in 2 weeks. Our Ped. has already told us that he has autism mild to moderate. But I have already been told by dr and school that the school testing can only give you a broad spectrum of the child's disorder they can not give a true dx. To receive an true dx you must see a developmental ped or a outside pshy. I am not sure as to if it differs state to state and once again i am only 3 weeks in to this myself and am trying to find my way as well.

[Logan's Mom]

I would definately get a developmental pedi, a neurologist or psychologist (who'd be trained in testing) for a medical dx.  As pp said, the school will only give you what they think would benefit your child in a school setting.  Furthermore, they most likely will be giving the least amount of services your daughter would need.  The Dr will provide a recommended treatment plan and I'd review the IEP again with the district armed with the new information.  The good news is that they are giving her services right now.  Most of the time it takes months to get into a developmental pedi, etc.  Also, not sure how good your insurance is...but private therapists are better then those that the school provides (well, in my opinion).

Here are some sites that I go to educate myself...my favorite being TACA

http://www.generationrescue.org/

http://www.tacanow.org/

http://209.200.89.252/search_site/chapter_map.cfm

It also helps to learn about your daughter's rights:

http://www.wrightslaw.com/

Good luck on your journey...the people on this board are extremely helpful

[oceanbluemomma]

Before you get a diagnosis of Autism you should find out how your health insurance views it - will be considered pre-existing? Are there any coverage benefits for your state? Are there any limitations with future life insurance for your child with the diagnosis of Autism?  I think a label is always a tricky situation - sometimes they open doors but sometimes they have limits. 

Another thing to consider is if there is something medically wrong with your child, and not strictly a neuro checklist via the DSM-IV? Like food allergies, inconsistent bowel movements(not everyday, many times a day, stinky, hard, small poops, puts belly on furniture and bends over), skin or hair issues - (like cradle cap, red checks from time to time, rough skin,etc), has spells where their attention is not the same, doesn't like to be in the sun very long, swollen belly, or stares off for briefs moments like they are in another world.  Other things to think about if she is having random tantrums, stuck on one thing or another, has to have it a certain way, sensitive to sounds, again these can be because of medical issues that need to be addressed and then those symptoms can disappear or drastically reduce depending on the situation.  These all can come from different medical conditions.

I don't know of any "Catholic" services, but check to see if you church offers Respite care.

Can I ask what you are seeing at home or experiencing?   Our son was diagnosed with Autism 2 1/2 years ago but sought out help because it just didn't make sense to me that what we were dealing with was a checklist.  My husband is in the medical field and they don't diagnosis anything off of a checklist -they run blood tests, xrays, whatever to tell what exactly going on.  So we ran all kinds of test on our son and found out he had food allergies(who knew-not me), this dysfunction, that disorder,and sure enough we treated those things and he is on his way to loosing that diagnosis.  We also just did a bit of Floortime therapy which was wonderful, so we incorporate that into our parenting style.

On another note, Head Spinning is so common on this journey but I have come across thousands of mothers who made that spinning stop.   TACANOW.org offers mentors so does Generation Rescue - a wealth of knowledge condensed into what I call the "cliff notes" of this journey.  Meetup.com offers great local groups for support and so does Yahoo. 

I so hope your head isn' t spinning more from my post? Just things to consider on this journey.

[marge234]

I'd search SBGrace's posts. Learned a lot from them.  Also a book Stanley Greenspan's, The Special Needs Child.  It is outstanding, and hopeful.