Autism Support Community

My son is 9 and was diagnosed at age six as having PDD- nos, this stands for pervasive development disorder, not otherwise specified. It means that he has some autistic symptoms, but not all of the classic symptoms of autism. For example my child can speak, his speech was delayed but basically is normal. He has the social skills of about a 7 yr old, and academic delays. I don't know the extent of your son's delays, but the great thing for you is it was caught early. If your state has early intervention take any and all help they offer. At that age he can be greatly helped and he may even be able to start school in the mainstream. My son tried a regular class with an aide, but he did better in a special needs program. Don't be afraid just seek help and listen to both your instincts and the professionals.

Thank u so much its so nice to hear and talk to someone else that has already experienced what i will be experiencing. Thanks again

My son has had both diagnosis at one time or another. PDD-nos and autistic spectrum. The most important part of the whole diagnosis is to get the help you need. My son did early interverntion at 2 and is now in a special education program. The only problem we find is that because these kids look the same as their peers the other kids can be very cruel to the developmental differences. Fortunately my 7 yr old doesnt seem to be bothered by this only his mom. Friends with special needs kids seem to be the most helpful

I have now had my son in Early On twice a week and speech therapy twice and the change I see is amazing. But what confuses me is that the speech therapist says he doesnt have PDD and the pediatrician says he does....I dont really know what to think....thank you for your reply

The speech therapist did not think my son was autistic either. I think people just remember autism the way it used to be and don't see all the new varieties we see now. It is kind of surprising that to hear a speech therapist say it, cause we as moms think wow they see all kinds of kids. For me I so wanted to believe what they told me, but I found thru the years that my son is who God made him to be and his diagnosis help him get the special help he needs. I wish I had more answers, also as he grows it is possible that his diagnosis will change with him.

Try not to pay attention to what well-wishers and the general public think about your son. A team of highly-trained professionals (with degrees) diagnosed your son - not some random stranger on the street that thinks they know what Autism/PDDNos looks like.

Now that you have the diagnosis, focus on getting the help you need. If you don't like the therapist or people helping you, please keep looking for one that fits your needs and works well with you and your son.

Good luck. And keep in touch through this support group. We're here for support.

-Laura

Mother of Ethan age 6 (neurotypical), Raymond age 4 (diagnosed with Autism on 6/19/09) and Luz age 3 (neurotypical)

None of my family, pediatrician or speech therapist thought my son was Autistic and even after a team of 30 specialists diagnosed him - they STILL didn't believe it.

Yea what I have realized over the past...well past year now is that all this time I have been going from doctor to doctor and specialist trying to figure out a diagnosis because my son was so borderline and a lot of his characteristics would typically rule out autism and then other symptoms would suggest autism and being that he had just only turned two a lot of doctors thought that every kid will learn at different levels and he will talk when he is ready. But I just remember crying every night because he changed so drastically he was talking at one so much and saying a lot of words but then when my daughter was born he completely stopped talking and then he started trowing these tantrums out of no where and there was absolutely nothing I could do the comfort him because I had no idea what was wrong. He wouldnt respond to his name at all and didnt pretent play or interact with others. I honestly was like every other mother and when I even heard the word autistic I immediately thought there was no possibilty because I have seen autistic kids and had no idea anything about it except what the public thinks. But one day something hit me I went to U of M hospital and sat for a three hour evaluation with three different doctors and all that they did was bring different toys in and ask me questions, there were no real physical tests and they all sat in a room for hours and no one could come up with a diagnosis becuase he was so borderline. That day something hit me and I realized that all a diagnosis is is what the doctors want to call a set of symptoms and instead of puttin all of my focus on putting a name on my sons special needs I put all of my focus on making a plan and being proactive and researching what I can do to help him. From that day forward I never went and saw a different doctor to "evaluate" him and try to figure out a diagnosis instead I started speech therapy and Early on program and started talking to other people that have dealt with all these situations becuase you all have helped me more than any doctor you all have been through all this already and know from experience and know what im going through. I am so grateful that I have excepted this and can now talk to people that understand my son and dont say "o im so sorry about your son" instead you are positive and instead want to hear all the accomplishments and hurdles he has overcome. I am very thankful that you take the time out of your day to help me and my family and I hope in some way you can help me help other mothers going though this. Thank you so much

I am so happy to have finally excepted all of this and realized that the diagnosis isnt what is important and there is no reason to put all my effort and drag my son to different doctors to put a name on his special needs. Instead I put all of my time and effort into what I can do to help him and give him everything he needs. Instead of focusing on what he cant do I focus on what he can do and how much he is learning everyday. I am happy to have found this website and find comfort in knowing that there is people out there that know what im going through and have went through it all also and have the same outlook on this as I do becuase my friends dont know personally what it is like. Instead that say "o im so sorry to hear that" and when I discuss this with you guys you are congratulating us on every new achievement even if it is just a new word. THank you all I am so grateful to have you.

Wow! It took me nearly six months to feel the way you do now! Congratulations!

You hit the nail on the head when you said: "Instead of focusing on what he can't do...I focus on what he can do."

I wish someone had told me that on the day Raymond was diagnosed. For six months I was in a daze thinking: "He won't get married! He won't speak! He won't do this! He won't have a 'normal' life!"

It was a miserable six months for me and for Raymond. One day, my friend who has a thirteen year old with Autism shook my shoulders and said: "You have to stop focusing on what Raymond can't do and start seeing all of the amazing things he can do."

It was the best advice I ever got. I finally saw Raymond and all the the amazing and wonderful things that he does have to offer the world.

And by the way - you are definitely NOT alone. Raymond cried day and night for nearly two years, from the time he was born until the time we got help from Early Intervention. Not one person believed me until the actual day that he was diagnosed.

(And on a sidenote - your diagnosis sounds exactly how mine went. I sat in a room with about 15-20 doctors who asked me a battery of questions and watched Raymond scream and cry for nearly five hours.) They were probably performing several different kinds of test. You should have received a copy of the diagnosis and the kinds of tests they did. If you have that look up those diagnostic tests and it will explain to you how they came to the diagnosis. Even though you say you don't care about the label anymore - it might help you understand exactly what PDD-nos is.

Anyways! Sorry for writing so much. I'm glad you came here and I hope you stick with the community. We're to help you and give each other support - especially when times get rough and especially if you don't have any support around you.

How's your son doing now? What kinds of treatment have you started with him? Have you heard of ABA therapy? That's what we do with Raymond and it's free, you can do it at home and it has worked wonders with some of the more problematic behaviors Raymond has.

Talk to you soon,

Laura
Mother to Ethan age 6, Raymond age 4 and Luz age 3

well it took me about 6 months just to admit to myself there was a problem then about 6months after that to realize the diagnosis isnt whats most important and that I needed to focus on ethans accomplishments instead of his delays. I was also in the same situation as you were with no one believing me about ethans problems everyone said hes fine he will talk when he wants to or told me numerous stories about how this child or that child didnt talk till they were four and so on. But they were with him 24/7 like me and I just knew something was wrong. And I am very thankful I didnt listen to other ppl because I probably wouldnt have the same little boy doin all these wonderful new things without all the intervention.
Hes doin well now. I get discouraged sometimes because he seems like hes takin two steps forward and one step back but I try to stay positive. A confusing thing thats going on right now tho is his new reaction to speech therapy. He has been going for over 2months now and was always very happy to go he goes twice a week and as soon as we would come up he would start sayin play play and come out talkin like crazy. All of a sudden one day my mother was takin him becuase we share days when I have to work and he completely flipped out. I mean screaming and the top of his lungs and crying so hard. Literally every person working in that office including my mom was crying seein him that upset. This was about 2weeks ago and we have still been going and the therapist recommended maybe started OT. Any ideas on why this could be happening all of a sudden? And any ideas on how I can help him? Im in a tough spot because I pay $40 a week for speech and drive an hour each way twice a week and to add OT twice a week would be 80 a week and an hour drive 4times a week. I just want whats best for Ethan and I will pay whatever it takes I just want to make sure im doing the right thing. Thanks so much for takin the time out to share your stories and advice and to just listen. It really means a lot. How are your kids? Anything new and exciting? TTYS

Hmmm...Two steps back and one step forward! Sounds like my life. LOL. Just remember, focus on the the two steps forward you made. Even if the step back was a big one...just remember that you still moved forward.

One of the things that ABA helps you with is figuring out the "trigger" to the bad behaviors (or in this case - the crying). What had your mom said to him? What was going on where they were at? Where were they? Were they in a completely new place? Was there a lot of strangers around? Was there a loud noise while they were talking? A horn honking? A dog barking?

It could have been a million things that caused the crying. It could have been Ethan saw an expression in your mom's face and he misinterpreted it and thought she was angry with him...or maybe he remembered something from Speech Therapy that upset him.

Once he is verbal enough to tell you what's going on - he'll be able to say: "Mom, too loud!" Watch for signs like him covering his eyes or covering his ears. That will give you the sign you need to get him out of that environment.

What I would suggest - is for a week - carry a small notebook with you and write down: 1. Where you're at. 2. What time of day it is. 3. When he start crying/tantruming. 4. What your response was to the crying. 5. Who was with you when it happened.

Do that for a week. You may find that you find the trigger...Once you find the trigger- you can teach him sign language - like covering his ears for the environment being too loud...Or sheilding his eyes if the sun is too bright. (Or whatever the case may be...)

Then once you get him to succesfully notify you of his distress without crying - then you can work on getting him to verbalize his distress in very simple expressions: "Too loud!"

It's my pleasure to listen, give my advice and my own experiences. I hope that it actually has some benefit to you.

And remember...you are not alone.

E-mail me anytime you want: indiaguerita@yahoo.com .

-Laura

My son is 4.5. At age 18 months he was diagnosed developmentally delayed and at age 2 they added a speech delay as he said NO words. At age 3 we had begun speaking and were progressing developmentally, but began having MAJOR behavioral issues. I was at a complete loss as I am a single mom and had no relief from him. Fortunately I work for a psychology department and have a boss that recognized things. My son was sent for testing and was diagnosed PDD-NOS, AD/HD combined, Sensory Processing Disorder, and a functional speech delay. In the 12 months since we began therapy (speech, cognitive, social, and most important OT) I do not recognize him. It astounds me how much he has grown and changed. He now talks well, tries to initiate play with others, expresses his feeling verbally for most part, and just recently began to dress himself and feed himself with silverware. I am astounded at the things he has accomplished because I promise a year ago I was running out of hope. We have an extremely strong support group with me, his therapists, day care, and in works with the elementary he starts next year. I will say the most effective thing with Sean was the introduction of Occupational Therapy. A lot of his behavior issues were due to the fact that he is unable to 'filter' and has a strong need to crash/fall/jump for soothing needs. I too was terrified at the diagnosis, but I am so blessed by it now. I slow down and appreciate EVERY milestone with him and am amazed everyday by him. He has amazing insight as well. Last weekend he looked at me and says, "God uses me" I said, he does, huh? and he say "Yep, he uses me to give you eyes so you can see." YES SIR HE DOES. Love my angel

My son is seven now. I too am amazed at the distance he has come. We still have struggles and my son also has a strong sensory need. He loves to crash/jump/fall for the feel of it. I was so sad at his diagnosis. I still sometimes feel why me. God has used my son so much to teach me many things. Blessing to all and enjoy the time off with our kids for the break.