Hi all,
My name is Nina and I am devastated. In fact I am crying as I write this. My 3 year old son needs to get an appoint. with a development pediatrician for a test to diagnose Autism Spectrum Disorder. I feel so overwhelmed and don't know where to turn. My son is a happy, social little boy. He does have a severe to moderate speech delay for receptive and expressive language. He has really improved since he turned 3 this Jan. He likes to rock and flap his arms. No other unusual behaviours. He loves to play with his brother. The therapist was concerned because he does not pay a lot of attention to others when he is playing and not a lot of direct eye contact. I do not really know what autism is and I am very ashamed. I have a 6 year old who does very well in kindergarten and I feel like a horrible mother. I do not know what to do but I just feel so bad right now. Can someone please shed some light on this. My son rarely has temper tantrums, loves to play and smile, he loves to cuddle and kiss. He is good with pretend play. His speech is that of a 2 to 2 1/2 year old. I just feel like the walls are closing in on me...

My heart goes out to you. I totally understand how you feel. It takes awhile for things to sink in when you hear the word "Autism". Autism is a neurological disorder that causes problems with communication and the sensory system. You are not a horrible mother and have done nothing wrong that caused your son to have delays. There are tons of theories as to what causes Autism, but nobody knows for sure. It is a very good sign that your son has the language skills of a 2-2.5 yr. old. It is also a good sign that he engages in pretend play. I would get him evaluated if I were you. If he does need help, there are a lot of therapies that are available and the sooner you start them the better. Things will get better for you with time. You need some time to grieve. This board has been very helpful to me and I bet it will be helpful to you too. Good Luck!

Thanks for your kind words. They want my son to do a ADOS test. Can someone please tell me what this is - can I find a copy on the net?
I really hope he does not have this but I am very , very worried.

Hi,
I had never heard of the ADOS test, but I did a search and found it on the web. ADOS stands for Autism Diagnostic Observation Schedule. If you do a search you can find more info (the rules of this forum prevent me from listing a website for you).

(((Nina)))

Good luck to you and your son! That he gets along well with his family, engages in pretend play, and is basically happy are all things in his favor.

Well, it is now Sat. morning and I did not sleep the whole night. In fact, I feel physically ill. Nothing will change the way I feel for my son or the love I have. I am so worried about him. He will start kindergarten in 2007 and I am worried. He has improved so much since his 3rd b-day in Jan. He is joyful and loves to play. BUT,
He likes to rock, flaps hands when excited, some limited eye contact when it should be consistent. They said his receptive and ecpressive lang. is severe to moderate.
I really feel alone. I do not want to wait 10 months. This is just very overwhelming for me...

Nina,
My son is 14 and carries the dx of autism. I know what you are going through. Please know these things.
*There is great hope today more than ever for the prognosis of our children.
* Nothing you did caused autism IF that is his final dx.
*If you are in the United States call your county Early Intervention team and ask for an evaluation. THey can do this free of charge. It is best to see a doctor who specializes in developement. It can be a long wait to see one and early intervention is vital.
*Make sure that you get a REALLY GOOD hearing evaluation done by an audiologist who does infants. THey can get results without the child having to respond in a certain way
* If you end up with the dx FIND A SUPPORT GROUP. Either in person or online
* There is a lot of information and treatments. YOu will have to decide what to do and what not to do. Listen to the experts then make a decision. Don't be afraid to change your focus.

all the best and I'll keep you in prayer

Susan

its not easy for most people to hear autism and think positive for their children's future. for my husband and i it was both crushing and the most uplifting thing we had heard in isaac's whole life. it crushed any idea that this was just a phase and that he would out grow how he acted and that he would suddenly become the most verbal kid on the block but it brought our world that was spinning out of control into sharp focus.

autism is not the end of the world. think about it this way, now you have a definate direction to go. now that there is an idea of what the problem is treatments can be refined so that your son can meet his full potential which what you are describing could be a heck of a lot! he sounds like he is very functional now, with the specialized treatment he may even lead a "normal" (whatever that is);) life, hold a job, get married, have kids, yadda yadda yadda... well, my husband did:) he didnt even start talking until he was over 2 (talking at all that is) and now he cant shut up;) our son is different though and there is a question of MR as well. but he is happy, healthy, cute, and most of all my son! so i am proud of him no matter what he accomplishes in his life.

something else to consider as well... the autistic brain has 7 percent more storage capacity than the neurotypical (normal) brain so once it gets wired up right so that things work proper (through the specialized treatment) it has the potential to be a better brain. unfortunately i am sure that my son has filled his 7 percent with tricks and ways to get out of working and how to look cute while doing everything he is not suppose too;)

find a local support group that you can go to if you can... i found ours in the local news paper because our local hospital holds monthly meetings for several groups. look around i am sure there will be something because where i live is fairly rural and we have a fairly large group. an offline group can offer you more info and ideas on how to get local services and how to get through some of that redtape. they will have the inside good on what happening there. as well as being able to talk face to face with understanding people who have been in your shoes and survived. G-Luck!

Nina-

Most of us on these boards have walked your walk. For me, it is my precious grandson who was diagnosed over a year and a half ago. Drake sounds like he was even a bit more severe than your little guy, but he has come such a long way! For every story on these boards, you will find a variety of stories about what path we have each taken to find the help we wished for our children. Drake thrived with a combination of dietary changes, being evaluated for what vitamins, minerals, and amino acids his body needed, a strong developmental preschool program, lots of love, a magnetic mattress pad on his bed, speech therapy, and currently, we are working on sound therapy. If you were to poll every parent on this board, their "recipe" would be different, based on available interventions, what we have read, who we talked to, and what special ways the autism has manifested in our children.

I remember clearly the numbing grief that hit me when we first heard the word, but this will pass, because what is waiting to surface is that part of you that wants to do what you can for your little guy. Check out the thread for books that we have read and suggested if you want to get a start on finding out what types of treatments are out there. These boards have been so incredibly helpful in providing support and guidance along the way.

Even though I don't imagine you can envision it now, you WILL be sharing your success stories as well. Throw your guilt in the gargage, for it can only immobilize you, and it has NO PLACE in this diagnosis.

Best wishes to you as you start your journey.....

Nancy

I felt a crushing blow too, especially since we already had a baby girl with Down Syndrome. I felt like God had piled too much on my shoulders. My daughter was born 2 months premature and had Pulmonary Hypertension and heart defects. She was not expected to live. Not only did she live, but now at 15 months she is of normal size and weight, the heart defects (which included a leaky valve, murmur, enlargement, and two holes causing irregular pressures) have healed themselves. Her pulmonary hypertension, which was expected to continue on until she was at least 7 years of age and possibly for a lifetime has miraculously disappeared and yesterday she came off the oxygen. She's happy, sitting, crawling, playing, clapping her hands, and is just a complete joy. The doctors are very, very happy with her progress....and really amazed. They said she definately beat the odds.

During this time all my attention was focused on worrying about her and I didn't even know my son was sitting right next to me all along with Autism. I didn't even recognize it even though I had spent years working with adults with developmental disabilities and had even tutored an autistic student in college. Here my little boy was thought of as the "typical" kid that would grow up to look after his little sister and take care of her and what I didn't know is that the outlook for his future would soon be in question.

I absolutely REFUSE to sit around and sulk about it. I'm directing my energy toward doing every possible thing to launch them into having a full life with independence. My daughter is in an intensive early-intervention program and now my son is receiving help as well. I'm happier than I've ever been in my life because I know my children were given to me for a reason and that it's up to my husband and I to take this challenge and make the very best of it and try to see it in a positive light.

Get plugged in to a support system. For me the Down Syndrome Society was a lifesaver. I made friends that will last a lifetime. I'm in the process of connecting with the Autism Society as well and plan to attend a meeting in the near future.

The thing I wished someone said to me when I got the news my boy was Autistic was- They can learn, sometimes it takes a lot longer, but they can learn! The book my reginal center gave me was awful, I felt like my son was going to be as good as jello for the rest of his life. He is know 5 and he still doesn't use word to communicate- But He has proved to me that anything I work with him on he will learn- It just takes a very very long time. It sounds like your son is great. He plays with his brother- WOW, and he does try to use words for communication- That is really great. If you work with him and Speech therapist, I'm sure he will do great. Don't morn the loss of the boy you thought you knew, he is everything you thought before you found out!

Hi everyone,
Thanks so much for your encouraging words. I am just praying that he is simply delayed and nothing more. I am trying to find someone who could test him privately so I do not have to wait 10 months. Your words of encouragment are wonderful to read. I am just very confused with what autism is. I grew up in the 1970's and never heard of this term before. What causes this? I had a normal delivery. My son is 3 years and he is a real joy. He always looks at me when I call him, always has the most beautiful smile, rarely has temper tantrums. I should add that we travel a lot and he is wonderful! He always sleeps the night, knows how to pretend play, loves to hug and kiss, enjoys dinosaurs, cars, trains, stickers, etc. There is nothing unusual about him except he --
likes to rock, flap his arms when he is excited, has started forming 4-6 word sentences, babbles a lot and I have a hard time understanding his words (his 6 yr. old brother is great at figuring out his words!), he was a late walker (14 months) . I do not know what else to say but I am worried because the speech people were concerned about his severe expressive and receptive language delay. They also said he shows a lot of potential. There are times when he likes to be alone - but who doesn't?
I was wondering why the increase in autism diagnosis? Is it because of the spectrum "they" have created which now widens the criteria for what is unusual? I would love to know how your children do it school? Do they stick out? Also, what is a magnetic mattress pad? I am still learning about this.
Thanks again!

hello *hugs to you* my daughter little nicole has autism and she is 2 1/2 and she is a very special little girl. She never did the ADOS test but she has seen a neuro specialist who hasnt diagnosed her and she has seen him twice. anyway i took her to a program who has a psychiatrist who evaluates children and she was diangosed there. it was very important for the diagnosis so she could get the therapy called ABA it is very effective for children with autism. She still hasn't started with TSS yet but will soon this month i hope. my daughter doesn't talk at all but has come a long way. Just wanted you to know you aren't alone and if you ever need to talk i am here. *hugs*

:wave: Hi all,
My name is Nina and I am devastated. In fact I am crying as I write this. My 3 year old son needs to get an appoint. with a development pediatrician for a test to diagnose Autism Spectrum Disorder. I feel so overwhelmed and don't know where to turn. My son is a happy, social little boy. He does have a severe to moderate speech delay for receptive and expressive language. He has really improved since he turned 3 this Jan. He likes to rock and flap his arms. No other unusual behaviours. He loves to play with his brother. The therapist was concerned because he does not pay a lot of attention to others when he is playing and not a lot of direct eye contact. I do not really know what autism is and I am very ashamed. I have a 6 year old who does very well in kindergarten and I feel like a horrible mother. I do not know what to do but I just feel so bad right now. Can someone please shed some light on this. My son rarely has temper tantrums, loves to play and smile, he loves to cuddle and kiss. He is good with pretend play. His speech is that of a 2 to 2 1/2 year old. I just feel like the walls are closing in on me...

Welcome!!! You came to the right place.
We all know what you are going through. It's not easy to hear that and it doesn't make you a bad mother. It sounds like your son is doing a great job.
Soon you will learn(start reading now) all the great things you can do to help him. And lucky for you he doesn't have temper tantrums. Mine does and it drives me crazy.
Hang in there it will get better.
Michelle

I also have a son that just turned three and he seems perfectly normal besides his delayed speech He lovesplaying with his sister and other kids, he loves to cuddle, kiss, etc. I am also trying to find out what the problem is if there is one? Remember this, jst because some peoples experiences have come out that there kids have autism doesnt mean that yours will. Every child is different. May God Bless you and your family!
Rebby

Hi everyone,
Just an update.
Firstly, I want to say that my son has improved so much daily. He is really trying to say full sentences and is now using "me" and "I". He says, "watch me mommy!" This is something which I heard an autistic child would never say. I am really confused because from what I read about autism - it is not my son. Yes, there are certain things which puzzle me, hand flapping when excited, rocking on occasion, eye contact issues. How do I know that he is not just shy? He plays well with his brother but seems shy around other children. He will look at other children but seems shy. I received a report from the speech therapist and they said that he has moderate to severe speech delay in receptive and expressive lang. They said that his greatest area of need is social interaction.
They said they noticed some Atypical things such as:
-rarely established his listener’s attention before directing requests and comments to them.
- Repairing miscommunication; he became agitated and frustrated, but did not persist in his communication or problem-solve ways for his listener to understand him
- Greeting; he was able to imitate his mother’s model, but was not observed to spontaneously greet.
- Using nonverbal communication, such as use of points and gestures to augment his message.
- Shifting his focus of attention between toys and clinician
So, what does that mean for him? Could it be that he has some small form of autism even though he is happy, playful, loving, etc.? Could it be just a developmental thing? I really need an answer so I can get him the right help. The wait lists are crazy. I feel like I am losing my mind.

Hi Rebby ,
Sounds like we are both in the same boat. Is there a problem like ASD or is it simply delayed development? Is he just shy?
I should tell you that my nephew was 5 when he started really talking. He is now 19 and just got excepted in a health sciences problem with a 97% average. He is quiet - yes but he is also very smart. I wonder if my brother had taken his son to a speech therapist (he never did even though he was told to) what would his son be like today? Would he think he was different and below average?
I do not have the answers. I have had several people in his daycare tell me to not worry. The speech therapist said it is not a "clear cut case of autism." So, does he have it or not? I do not know but I am very worried. In my opinion, he is a very special child who always lights up when he sees me, hugs and cuddles me, learning new words and sentences everyday. I always called him my little "happy face" because he always has a smile waiting for me. That is why I am very shocked that he needs a developmental assessment yet no one is telling me that he does not have ASD!
Thanks for reading - I guess I need to vent...

my son's name is isaac and in hebrew that means laughter... and he lives up to his name all of the time. he has a smile that melts just everyone's heart and his giggle could quite possibly end any chance of war or strife if we could broadcast it world wide:D really though, no one (NO ONE!) has been able to keep a straight face to that giggle. he hugs, he loves, he cuddles all of the time and he is autisic. in fact the cuddling delayed him getting diagnosed for 2 years... the worst mistake in his life. he is SEVERELY autistic... and those missed years of therapy hurt alot.

to me, it seems that you think that autism means low IQ. it doesnt. when you have compared your two sons you always make a point to say that your older son is smart. if your younger son is autistic that doesnt mean that he isnt just as smart as your older son:) you will not be able to judge his IQ until he is ready to let you:) my husband has ALL of the classic traits of aspergers... and when he was young his mother had his IQ tested because he had speech delays... yadda yadda yadda... and they found out he had a genius level IQ. your nephew could be an aspie as well... a science field could be an ideal field for an aspie. we go to an offline support group once a month and their is a lady with autism that generally shows up too... she has two phds so all auties arent dummies either:)

i think you should really look into an offline support group as well as here. we have found our offline support group invaluable. its nice to see people face to face that know what you are going through, can give you support and guidence, and can give you hope, as well as help you learn to get past the pain and become an advocate for your son. if he cant get his needs across, then you have to learn which toes to step on to do it for him;)

autism is just a label. he is still the same boy. and if you are keeping current with the threads, there are LOTS of high functioning auties that end up getting the label taken right off. think of it this way... if he is autistic NOW then let them call him that so that they know what he needs for services, how to fund it, how to approach his treatment. autism might just be NOW and not LATER... later he could be aspergers... later he could be PDD-NOS... LATER he could be the perfectly normal kid who sits in the third who is a little shy and gets straight A's and has a girlfriend that you are terrified he might get pregnant...:D what?... dont tell when you thought he was normal you didnt worry about that;) still might anyhow:) one mom at support group is at that stage now... her son with aspergers is dating:D

its not the end of the world... just a detour to a bit you havent seen before... look at it as the scenic route to yours and your families life. might take longer to get there but enjoy the journey along the way.

Hi Liz,
Thanks for your post which was informative but also a little disheartening. You mentioned that your son is cheerful and cuddles YET has autism! I thought that my son's cheerfulness shows that there is NO way he could be autistic. :confused: I have been reading a book written by a mother who said if your child says, "watch me Mommy!" there is no way he could be autistic since an autistic child would never say that. Is this true? :confused:
I would love to hear more about your son - why was he diagnosed? How old is he now? How is he at school? My son will be starting kindergarten in 2007 so he still has some time. I do notice a progression in him. I really feel for many of you who seem to have children with must higher cases. I also must say that I applaude all of you and your strengh which is really an inspiration for me. My son has not been diagnosed with anything and I am fallign apart! I would love to give you all a hug.
Does anyone know any great support groups around Ontario? I would also love to hear more about your children, their symptoms, how you cope, etc. How do your children manage in school? How do you know what the line is between autism and a simple development delay? Also, how do you encourage your child to show more eye contact? My son does sometime but not consistently...
I know...I have a ton of questions...this is all very new to me...
Thanks so much.

we found our support group in the paper. we saw it before isaac was diagnosed and i considered going then but waited. although plenty of people do go who want information because they suspect autism or because they are waiting for the diagnosis.
our support group was listed with a bunch of monthly meetings sponsored by our local hospital. some of your son's service providers might be able to give you a heads up on whether or not there is a local group if you cant find one listed anywhere.

autism is a spectrum... and my son is bright red:) there is this t-shirt i saw that describes him well... it said "totally flaming autistic". that about sums up isaac:D but because its a spectrum disorder no two cases are alike. dont buy into things like the "watch me mommy" thing. my son used to say "I'm mad" and the dr. he has was shocked that he would use the word "i'm". didnt change his diagnosis

you cant compare my son to yours for a good check... isaac is way more severe than most kids with autism you will see now a days. he has been refered to by professionals as "the way autism used to be" "a classic case of autism" and my personal fav. "the most severe case of autism i have seen in years" so your son will look perfect next to mine:D we ought to put them in a room together and then you would feel alot better!

isaac was born weird... he came out and stayed awake for hours. he didnt like to be bundled up and wanted to stretch as much as he could and that was only hours after birth. he wouldnt wear shoes or socks for his entire first 18 months of life. at six months isaac started to REFUSE to make eye contact. if you held him up to make him look at you he would turn his head... if you turned him so he had to look at you he would laugh and turn the other way. we thought it was a game at that stage because he thought it was funny but it wasnt for fun. he never developed speech of any real sort. he says momma, dadda, and occassionally will have a burst of speech but those burst are getting fewer and farther apart so he is really non-verbal. since he learned to crawl and walk his entire day is spent unless you force him to interact with stimming. when isaac was very young his stimming consisted of putting his head on the floor while on his hands and feet sticking his little butt in the air and looking at things from this angle. then he discovered the joys of string:) now he spends his free time in the pursuit of the perfect object to spin on a string.

isaac will be 5 in august he was diagnosed when he was 3 and a half but honestly we pretty well knew his whole life... we just waited for the doctor to catch up... i regret that. we should have pushed the doctor. he will be going to public school this fall and attending the pre-k class but will be doing highly modified work with 2 one on one workers, one for the morning session and the other for the afternoon. we dont expect him to do as well as the other students in a general academic course because right now you cant even compare his thought process to the way those kids think.

as far as coping goes... well, we love him. all kids are hard. we have long ago learned some of the tricks that make isaac tick:) we can cut alot of behaviors short if we just pay attention to want he is trying to communicate. i have all of my siblings around me and they are all caring and understanding. my older sister in particular is fiercely proud of him and loves no one more than him when it comes to her nieces and nephews. my younger sister is overwhelmed with her normal children (number 4 on the way) but still is willing to take him whenever i ask. she says he is easier than her two daughters who are 5 and 4.:) so we have our support groups, we have our family, and we have our pride and that is how we cope. my husband and i are not cure autism activists. we are much more autistic pride than anything. we dont go around saying that we think all kids should be autistic but we are proud of our son because he has over come alot just to get through his every day life. he is in a constant state of sensory over load. noises hurt him, lights bother him, quick moments, so on and so forth. so for him to interact with us as much as he does is a HUGE accomplishment. anything he does on top of that is icing on the cake. so my advice is to be proud of what you son can do... dont lament what he is behind on... plug away at it and let him blossom. let him be proud of his accomplishments dont let him think that he isnt good enough.:) make sure he knows he is.:) happy, healthy, then if there is enough time accomplishments, is how it works around here.

anyhow, sorry so long but there is a ton of things to say. hopefully i didnt confuse you more! just keep on putting one foot in front of the other and keep your head up for your son's sake. kids will pick up on things, even if they are autistic, and will know when something is wrong. keep strong, but know that there is plenty of help out there.

oh! i forgot! isaac's eye contact has improved alot because he himself has improved at his ability to interact with us. BUT we still have to cue him to look at us sometimes. we started out by saying look at me to isaac while turning his head so that he had to look at us. now i can just say look at me and he will turn his head to me on his own. when we are giving him directions we have to make sure that he is looking at us so we know that he is actually taking it in as opposed to just tuning us out. you had asked about the eye contact and that is how we do it. he has learned that you are suppose to look at some one when they talk because we have had to teach him through phsyical example. what is considered commom curtesy is just considered extra fluff that makes no sense to isaac. :) really, what does social niceties have to do with every day living anyhow;) G-Luck

For us it was totally different, Cadence who is 5 years old, was born normal, Normal infant- I didn't see or feel anything wrong with him, He crawled and walked at a normal age and even said cat, dog at normal age. He was always smiley and happy. He didn't however point at things at 10 months, and I would always say water when he took a bath in hopes he would say it back and he didn't until he was about 3 years old. But like you my son was not only normal he was ahead of his older brother with indapendence. When Cadence wanted something he could not reach he would carry our laundry hamper around so he could reach something, If he was hungry for P&J he would get the peanut butter, Jelly, bread, butter knife and make it himself!!! His older brother who has always tested a couple of years above his own age had not figured out some of the things Cadence was doing. We thought we had a geniuse and admired him greatly. We thought he was very shy, because he didn't talk yet, his brother talked very well at 15 months, Cadence was almost 2 and would come and give us loves, kisses and play some baby games, but would not talk! So at 2 1/2 I took him to his DR and when I mentioned Autism he sain NO WAY, Cadence holds you and wants your affection. Well I went to my local regional center- and they said he is Autistic. MY husband and I were in huge denial, but I knew. I did feel like my child died, everything I thought seemed like a lie. It took me awhile before I relized he is the same smart, loving, carefree boy. His speach therapist was the best thing that happened to us. Like I said earler the more we work with him the better he gets! He still tests higher than normal children in academics but he won't use the words he knows to communicate, and he still has problems making eye contact. We have had a lot of succsess in helping him be social- If you want to know some therapy games for home Let me know!

I will just go ahead and give you some game Ideas. Set up a time of 20-40 min together
1. take pictures of everything around your house he enjoys- I go to the picture maker at wal mart and make them I.D size (laminater 20$-priceless)
make them into flash cards. Then later go around hand & hand or carry him and name the objects around the house.

2. He loves this song we sing, I learned from his school
who's at home today- Cadenece, Cadence- Who's at home today-Cadence is here! Then Mama,DaDa,syblings. We point, touch the person or pass a mirror around to who's name we are singing. We switch it up to what ever location- Who's in the car today- who's at grandmas this song has tought him to not only know everyones name but to look at and acknowledges that peason.