Autism Spectrum Pdd-nos-will Always Be There or a Child Can "Lose" Diagnosis?

It all depends on several factors:

* Where the child is on the spectrum;
* Whether or not they were diagnosed early;
* Whether they received appropriate and intensive early intervention;
* Whether the family dynamics offer the child the kind of support and optimism he/she needs to progress and exceed boundaries;
* Whether the child is set up for success by his/her parents, teachers and others that are in charge of his/her care and well-being.

I believe that the diagnosis can change. In my son's case, he has gone from being moderate ASD to high functioning. Since he is a fluid, ever changing human being and we are doing all we can to get him to teach him skills in a way that is meaningful to him, I expect that he will make his way into the Asperger's territory sometime soon. It's been a lot of hard work (he's busier than most college students it seems) but well worth the effort. And children with autism do go to college.

As for whether or not they can be independent, well, people are no longer viewing autism the same way that they have done in years past. We are challenging the belief that kids with ASD cannot change and should be segregated away from society. We are learning more about how the old way of (not) treating autism and having low expectations has more to do with society's limited thinking than the child's own limited abilities. So, yes, I do believe that a child with autism can live an indepedent life depending on where the fall on the spectrum, what support they have received and whether or not the people that are entrusted with his/her care have made the effort to set the child up for success.

This is just how I see it.

I believe that it can be 'lost'. My son was diagnosed with it when he was three and a half. I took him to the clinic because I was looking for additional therapy. I was extremely dissapointed to learn that all they could do is diagnosed.

He did however received hour upon hour of speech therapy and OT. He received this therapy through the state's regional centers, San Jose State University and the school district. I also made sure he attended great preschools from the time he was two and a half.

At age seven, he is now in a private Catholic school. He had to test to get in. He is above grade level in reading and math and loves to socialize with the other children. He isn't as 'mature' as some of the students. He definitely isn't the popular kid in class. But he does have friends.

He is still quirky. He doesn't like jackets and cups that have words on them. He has a hard time regulating his volume of his voice. He is also very loving and has a fantastic sense of humor. I guess the doctors would say he still qualifies for the diagnosis. But, during his IEP through the school district, the Occupational Therapist pulled me aside and told me to throw away any paperwork that gave this diagnosis because it would close doors rather than open them.

So after careful thought, I have chosen to be careful where I share this information. I am always honest and adknowledge with teachers his quirks but I don't use a label. He functions quite well in his environment but I am not blind that we have more work to go.

There was a time where I wondered if he would ever learn to talk. He now speaks very well and reads above grade level with comprehension.

So the 'lost' diagnosis really begins with you. Make sure that she gets every therapy, every chance to socialize, and every opportunity to explore the world and the wonderful places in California that can enrich her life. Make sure that 'doors' are not shut in her face but open.

Take risks, without them how can she learn to operate in this world? This means that if you have the opportunity to go to Disney World or other far away places, you take them even though she might throw a fit in the airplane terminal.

As her parent, you will need to learn to think outside the box. I always feel like I am playing Survivor with him. I have to outwit, outplay, and outlast him. But some of my best parenting skills have been developed because of him. When he needed to be potty trained, he refused to go no. two in the toilet until I came up with a chart system. I drew brown clouds and everytime he went in the toilet, he colored one in. At the end, was an equal sign and a picture of a toy he wanted.

To be honest, I too, probably would have been dianosed with PDD-NOS as a child. I certainly had my quirks. Back then, this diagnosis did not exist. I am a graduate of college, am happily married for the last 17 years and have three children. When I was placed on bedrest during my last pregnancy, the parents of my fifth graders class and my bunco group got together and made dinners for us every night for four months. To me this is a testimony of how well I function in this world.

No one knows what the future may bring. My brother was 'good' at everything. He should have been very successful at 'life'. But at 36, he is still living at my parent's home and can barely hold a job. Meanwhile, if you looked at me, I should have been him. I'm not. I know that my own son will most likely succeed because he is so stubborn and that stubborness will hopefully become perservenance.

Good luck...most importantly, always ask yourself, What would you be doing with her if she did not have the diagnosis? Then, do it!

When my son was first diagnosed, my husband and I were told to write a very specific will outlining future care of my son because he would likely need life time care. This doctor that said this is considered to be among the best in the diagnosis and treatment of autism. My little guy shocked him and everyone that has worked with him. It was an absolutely relentless struggle at home. I became one of those warrior moms that pushed 24 hours a day. And while I like to take some of the credit, it really was my son that also never stopped working. There was a time when we would go out in public and eople could tell that I had a child that was not typical. I do not think that most people would now be able to tell, but at home, I know. OUr house is not set up like everyone else's, I know what things are safe and what things are still a struggle. So, he is not "cured," but I do believe that he has learned how to cope with the typical world and that he will develop the skills to live on his own independently. I think life will be more of a struggle in some ways, but in other ways he sees this magical world that I do not see. He might be the captain on the chess team, but he will never be class president. I am just so happy to have a boy that looks at me, talks to me, and let's me kiss him. Sorry, I digressed, but I think you get my perspective.
C.

That is a hard question, mostly because I think that the answer is not what you want to hear. Autsim is a neruological diffference that does not go away. Kids with early, and good therapy improve, learn skills, close the gap in developmental delays, learn things by rote that others know without instruction, and live good quality, successful and happy lives, but they still have ASD. Maybe you will not see it so much when they are grown, maybe they would not "test" on the spectrum, but it is part of who they are. That is not a bad thing.

Nobody can say if your child will live independently. Some can, many do, and some do not. My oldest with ASD is 18. She is extreemly bright, but we doubt that she will ever live independently. She is just too vulnerable. I wish I could say that being bright is the reason that a child acheives independence, but that is not the case. You will know soon, but intellegence is broken into many, many different skills, and just becasue one child's fluid reasoning (mathmatics) ability runs in the 130+ and blows her IQ into the high average range, her social reasoning skills can still be in the mentally retarded range. Great calaculus ablity is not going to help her know how to ride the bus without getting lost or remember to lock the doors, or turn off the stove.

Ours can do a lot of things. She is one of the happiest people I know. She has many, many, many friends, and they are all on the spectrum too. They have a community of the least judgmental most forgiving I have ever seen. We could all learn something from them. They do not care who wears what, heck, most of them don't care if they bathe, but they are never insulted by the social miss steps of another, and a simple applogy is all it takes for them to move on. They don't hold grudges, and they don't ever wonder or care what somebody else thinks. It is not what I would choose for my child, but I did not get to choose, and she is not unhappy with who she is in the least.

I know it is hard. Right now, you are probably struggleing with your own idea of who your child would be. It is a type of grief and when our children are diagnosed, we suffer a loss of what we cannot dream about anymore. You have to move on and go on dreaming for your kids just like before the diagnosis. The reality is, all kids get to choose in the end, and we have very little to do with what they end up choosing, and there are a lot worse things that having a happy adult child with ASD. Your goals are the same, just shadded a little differently than you expected. Get the best for her that you can, get her the best intervention, the most enrichment, and more rather than less therapy. Give her the chance to find her group, they are out there, and she will love you for letting her, be her. You just want her to have the most meaninful choices she can, what she does with them, that is up to her.

M.

There is no 'gold standard' test for autism spectrum disorders - no blood or genetic or imaging test that says "this is autism". Since the diagnosis is based on a clinician's observations of behavior, a child can get to the point where the behaviors are controlled/managed/eliminiated enough that the child no longer fits the diagnosis. Does that mean cure? Does that mean recovery? Does that mean incorrect diagnosis?
Who knows...
I think that these children will always be neurologically different in one way or another. But do you know what? We are all neurlogically different to one degree or another.
If your daughter is so high functioning that therapists and Dr.s are starting to question the diagnosis, I think that her prognosis must be pretty great. Just keep vigilant to make sure that her changing needs - educational, emotional, social - continue to be met as she grows.
Good luck!

I agree with what Michelle L. said. While it may look like PDD, Autism or something on the spectrum at one point, children change as they grow and receive support. Just because it appeared at one point that he/she fit the diagnosis, it does not mean they will always fit the diagnosis. There is no way to prove the diagnosis, it's a subjective opinion that is only based on an assessor's observations.

My nephew started with PDD-NOS, then autism, then back to PDD-NOS. He's now 14 and they are certain he has Aspberger's. I'm sure when he's 20 they will have another label. He functions quite independently and has few challenges except in social interactions.

Our own son has a diagnosis of PDD-NOS since the age of 3, but he receive that before he was diagnosed with auditory processing disorder (CAPD) at 6-1/2. Once he got the CAPD diagnosis, and we accommodated for it, his personality flourished and everything changed for him. Does he still have challenges? Yes. But now we know his speech delay and social skill challenges were the result of not understanding what he heard. Does he still have the PDD-NOS diagnosis? Yes, because that is what entitles him to the services he needs (believe it or not, auditory processing disorder is not considered a disability or a learning disability, so it doesn't qualify him for anything).

My suggestion would be to only accept the labels in that they get you services. They really don't have any validity since you could go to 3 assessors and get 3 different labels. I know first hand because we had that happen to our son. Just love and support your daughter and know that the label is not a predictor of anything.

i think that they can live independently. my daughter was diagnosed at 2 and shes four now. with the ot, speech, and pt shes come along way already. yes shes still has "special" needs but she high functioning and is actually so intelligent the evaluators said her iq is off the charts. they suspect she will be able to function at a close to normal level some day. so in the words of my doctor "labels dont mean that your child cant live normally, jsut that they need some extra help along the way" hang in there.

O. of my son's best buddies was diagnose PDD-NOS when he was young. He had therapy through Early Intervention and got to the point where they said "That's all we can do." He started Kindergarten and the school is not even aware that he ever had a diagnosis. Does he have little issues that I see since I know the whole story--yes. Does he stand out from other typical kids in any way? No.
Know this--all kids have issues of O. type or another. I'm a firm believer in that. Whether they hate the feel of their sock seams or will only eat chicken nuggets! haha
Your daughter sounds a lot like my son's friend. She'll be fine. Get her whatever services are available to her and utilize all resources. Of course she'll be able to live independently!

Hi J.,
I do not have a child with this diagnosis, but recently met a mom (with a 14 year old) who said he was diagnosed with autism and she worked with him in so many alternative ways and it made a difference. She used NAET which deals with allergies, and my sister-in-law has a child with PDD and does not give him wheat and she sees a difference. Your daughter will likely grow up fine and be independent, but it can't hurt to look into some of these alternative treatments to help along the way.

My 13 year old's very first friend from infancy is high functioning on the autism spectrum. His parents have done all they can do to get him the help he needs. I have watched him grow up since he was 10 months old when we met his family. Yes, he is quirky, but is very independent, and I am certain will have no problem living on his own, and even going to college. He rides his bike several miles to junior lifeguards during the summer, we have taught him to surf and he's quite good (BTW, kids on the autism spectrum LOVE water sports, especially surfing).
He gets decent grades and all (in a very high ranking school district), he's just a little socially awkward, but my son didn't even really notice until they hit puberty, and my son doesn't care. It's still his friend you know? :)

I would recommend you check out a really neat website and doctor called Dr. Mercola. He is totally cutting edge with his nutrition research. I don't use any of his nutritional products, but his newsletters have been very very eye opening. His daily email newsletters are free. We have changed our family's eating habits because of him. I remember seeing some articles by him that deal with autism and also a diet he uses to treat autistic kids that really helps them.
The website is www.mercola.com

God bless you.

Autism does not go away, anyone who tell you that has no clue what they are talking about. If someone's Autism goes away then they do not have Autism. Spend a lot of time researching Autism and get in touch with your local Autism support group. Raising a child with Autism is not easy and make sure you talk with other families who have a child who have Autism as you will get the best advise from them becasue well meaning people have no clue what it is like.

My middle daughter is 8 and she has Autism, she was diagnosed when she was 4 1/2. One thing you need to remember is that when you meet 1 person who has Autism then you met 1 person who has Autism, no 2 people will be the same. You will have similar quirks but Autism is a spectrum disorder as you can go from very low functioning to high Aspergers. PDD-NOS Pervasive Development Disorder is not easy to work with, people hear high functioning although PDD-NOS in my opinion isn't that high, has it's own problems. It isn't easier than low functioning it comes with it's own issues especially when people hear high functioning they think that is not Autism is not true.

I have heard very good things about ABA, Applied Behavior Analysis with helping people. So that is something you may want to look into. In DE we have a school who works with some kids who have Autism and ABA is the therapy they use.

People with Autism can live independently, you need to make sure you teach your child life skills so they can function on their own. Most people who live independently will need some supports. I think my daughter will live with us. My goal is to have a home for her that will eventually go to her and hopefully one of her sisters so she will have some help.

Hi I am a 33 almost 34 year old woman with PDD-NOS myself. I was diagnosed right along with my 11 year old son. He was diagnosed at age 9. Almost 2 years ago now. It will be 2 years ago in Feb, our lives changed. We learned why me and my son are the way we are. To answer your question about independent living I guess I would have to say yes and no. There are times that yes I can be alone and live all by my self at other times however I don't have the coping skills to do it. At age 15 I moved out on my own. Payed my own bills and all but I lived right next door to my grandparents. There have been other times my ex-husband worked graveyard and slept all day, so you might as well say I was a single mom of two kids and did it all on my own. Other times when he worked graveyard we had to bring friends in to be with me and help me out. It comes and it goes there are good times and bad times. I just try to lean on my loved ones and God and get through it. My plan is to put my son a mobile home on my land so he can do like I did at 15. Maybe he won't do it at 15, but he can do it some day. We have to home school him because of his temper. So I know I will have to keep him close. He is already on disability. It helps calm him down. He has had all the treatments out there and has good insurance being on disability just like I have. We have both had the best of the best. Facts are facts there are good times and bad times. Good luck and God Bless.

I do not have an autistic child but if there was such a thing back when we were kids (born in 1970) I am POSITIVE that my husband would have been diagnosed as a high functioning autistic.
He has his quirks but most definitely is capable of living independently! Don't put too much on this diagnosis. As I said, they weren't even giving out such titles until a few decades ago. Highly functional autistic children were just "strange" if anything. Don't be too eager to fall into a handicap, just because of our current ability to diagnose.
Your little girl will probably end up to be a lovely, successful young lady.

Hi, so I know you asked this question for the Moms but I wanted to give you the perspective of an adult who is suffering from PDD.NOS. I was diagnosed at 12 and went thru about 4 years of therapy. I’m now 29 have a full time job in a career that will lead to a management position as long as I want it to, have friends who have become like family to me and hope to one day get married and have a family. This is not to say I don’t have struggles because I do. Most people think I’m about 21-23 by my maturity level, I get stressed out and have anxiety issues, I have a tendency to stay near the edge of a large group of people. I have built coping mechanism into my everyday life to help in these situations. I meditate, pray, and read to relax and rebalance. I keep a close relationship with my Mom as she’s always willing to answer questions when I’m confused about something. I chose to live the best life I can knowing every one has issues and mine are really no different from other peoples issues. I truly believe that if a child is raised with love , compassion, and the knowledge that it’s ok to be different as long as you do your best that child will become the best of themselves and pass every doctors expectations. I hope this helps (Also forgive the spelling and grammar mistakes it’s really late and I’m typing on a phone)

Hi J.,

If you're on Facebook, check out Asperger's awareness page. They have forums where questions are posed and many folks all over the planet respond. You may also be interested in Wrong Planet, http://www.wrongplanet.net/ another forum based website.

The more you understand, observe, advocate, and love your daughter the more she will progress towards being as independent as she can be. As a special ed. teacher, I've observed many students on the spectrum who appear to make little progress for a long time, then all of a sudden a break through will happen. I always tell parents, not to give up, the task, skill, concept will get in there, it sometimes takes time.

Good luck,
Wendy

To find answers to all of your questions, start with a group who has been there and done that and can help in so many areas, www.tacanow.org

There are more and more children, who were even severely low functioning, who are losing their diagnosis. The doctors don't want to talk about it because that might mean that the children were not born with autism and that they developed it along the way somehow.

Please, be very careful with any further vaccinations at this time as your daughter's immune system is probably already at risk and compromised.

With a PDD-NOS, it is harder to get any services that your daughter needs so do give TACA a call and check out their website. They can help.