Other Autistic Parents

I have a daughter who will be three in December whom was diagnosed as PDD-NOS. Since Autism has a wide spectrum; she has some characteristics. I personally am having a very difficult time accepting it.

She has a speech delay, she only says about 20 words and has A LOT of babble and jargon. Because of this speech delay, and her frustrations, she has severe tantrums and behavioral issues.

We did go through our insurance and once she was consulted by a therapist, she was referred to the Regional Center. She is in this program until she turns three and then the School District will take over, and be entered into a Special Ed Preschool. She needs help with her speech.

You are not alone.

Hello A.,
I completely understand your frustration. Our family has delt with austim for many years now. Last night I watched a taping of Larry King Live that my hubbie recorded for me. I don't know if you are familiar with Jenny McCarthy but her son also has autism. Or had...??? It would take to long for me to try and explain it so here's a link to her page on the autism speaks website

http://www.autismspeaks.org/inthenews/mccarthy_autism.php

Please watch her interview with Larry King. I am going to go buy her book today. Everything she has to say is so interesting. It has been years of confusion for us with our son. Between mild MR, spectrums of autism, seizures and learning disorders we were so overwhemled for so long. He is finally doing better and I think a big contribution to that has been bec. I am now a stay at home mom. Not only do I have time to give him my undivided attention I also now have time to research a lot of things I wish I had before like autism. Please DO NOT believe everything the doctors have to say. I did for many years and regret I didn't do my own research. Be an advocate for your son. It is possible he can be cured. Please watch the taping. If you can't watch it for some reason then at least check out the autism speaks website or Jenny's book. I haven't check out this website yet but I am going to today it seems really good as well

http://www.talkaboutcuringautism.org/index.htm

God Bless,
S.

As a mother of a son who was diagnosed with PDD-NOS, I agree with the others get in touch with the Regional Center in your area. Even when you son begins with the school district which at least in our area is at the age of 3, they may have some classes/services that would help you. I went to behavior classes which helped me understand how to deal with his behavior. I don't want to alarm you but be prepared to fight for everything for you son. It seems that as we as parents know what's best for our children and the outside world doesn't want to do what's right. Depending on how severe his Autism is get him involved with other kids that have no "disabilities" it keeps them grounded and may actually help bring him back to the world. If you need to talk feel free to email me. I can understand what you are going through.

I don't have an autistic child but my niece has a seizure disorder and a list of delays. Based on my knowledge of her situation I would just say that the best advise you could ever get is to get in contact with the Regional Center in your area. They have fabulous resources to help your son's developmental progress. They will assign you a teacher that can meet with you who will recomend services that will help him. Hang in there I know it must be tough...more so than I could imagine...but there is help out there!

A.~

I'm sorry to hear about your son. Those doctors can be very frustrating. Check out the book that Jenny McCarthy wrote "Louder Than Words". Her son also has autism. I wish you and your family well.

A.

Most doctors (I have found) have little to no experience with autism. My son was receiving speech services at age 2, and while I knew he was autistic long before, no one else believed it until he was 3. Many educators are told that autism can't be diagnosed until age 3, so many chalk up any delays or concerns to parental overreaction.

Also, there is now a bit of a backlash in the special ed field where we are being told that we are 'overdiagnosing' autism, much as some say we are doing with ADD, so many educators are very cautious about saying anything.

Honestly, the only people who can competently and truly diagnose autism would by a psychologist, preferrably one employed by a regional center.

If you haven't already, I would contact your local center, have an official diagnosis made through them, and get your son signed up for services through them. THEY will fight your insurance company, and probably make more headway with all the tools at their disposal. You may have to push them and investigate programs for yourself (as often the counselors are very new and have a HUGE caseload), but it will be worth it in the long run, and much simpler than trying to go through your insurance company to get services.

Good luck!

Kat

Well, I would say a diagnosis at three would be great and you should consider yourself lucky. My son was not diagnosed until he was 10 and looking back ALL the signs were there. It wasn't until I saw a Dr. Phil show that it struck a nerve it was at that time they admitted him into a mental hospital for evaluation only to discover that he had a form of Autism. At least at three years old you are so far ahead of the game. And to find out before having to attend school is such a blessing.

Hi A.,

My son was diagnosed at about age 3. He is now 6 and doing so well. You definitely need to contact your local Regional Center. They can help you get services that insurances don't cover. Also, contact your local school district asap. They can also help. Our school district put my son in special education pre-school at age 3 1/2. By the time he was 5 he was ready for mainstream kindergarten. Early intervention is key. Please don't hesitate to contact me if you have any questions. N.. ____@____.com

hi A.,
i don't mean to intrude on the topic since my daughter is not autistic, but, my sincere advice is to focus on your son, and let go of the anger, nothing good will come of it. and i'm no expert on autism or on insurance companies but perhaps they were being cautious, trying to rule out every other possibility, better than giving a false diagnosis.