Autism question

I was told yesterday by a developmental pediatrician our son most likely has autism. We are so confused and I have some questions. First we need to get a formal evaluation to confirm her suspicians and are working on this. My nephew has autism and although I know the spectrum is so different I still cant help but wonder. Had anyone's child with autism not fit the typical mold. My son was always delayed and never regressed. My sons only non issue is digestion and his easy acceptance of food. He is excited when family comes. He seeks contact with people, including strangers. He hugs strangers and friends alike. He seeks our approval and makes eye contact. What he does not do is speak much (he just turned 2), one day he can be great another he cant pull himself together, and he screams alot. He does not notice or care about a change in my tone. If I sound angry he giggles. Any input would help, thanks.

Hi mlhall

I know this is a very difficult time, when evaluations are still going on and a diagnosis hasn't quite been made yet. I just wanted to let you know that we have a very helpful article on what to expect during that evaluation in our "Newly Diagnosed" section, towards the bottom of the page.

Go to "Newly Diagnosed": http://www.iancommunity.org/cs/newly_diagnosed/

Then scroll down to Catherine Lord's article, "Frequently Asked Questions About Autism Spectrum Diagnoses."

Children vary so widely across the spectrum. Some do make eye contact, and some do not. Some are affectionate, and some are more distant. Some regress in early childhood, losing skills, and some don't at all. The unifying thread is a social disability - an inability to "read" and respond to the social world in expected ways.

To learn about the full range of the autism spectrum, see our "About ASDs" section, here: http://www.iancommunity.org/cs/about_asds/

Hello.
I just wanted to tell you, that you aren't alone. My daughter was recently diagnosed as well. She has many of the similar traits your son does. She makes eye contact and is affectionate, but in our instance, it's only family members and a handful of friends, you know, the kind that are always around so they are like family.

I know what you are going through, as I am learning about all this myself.

I think that everyone has at one point been in your shoes. My son at 2 had similiar behaviors. But he also spun around with the ceiling fan, lined up things, and we thought he was deaf.I knew in my gut this is what it was. But i had no clue what to do about it. Shortly after we moved to be closer to my family. it was just me and 3 children. We took him to a psychiatrist and she said "oh, he is too loving to be autistic!" Even though all the basic signs were there. since then, he is 9, i have seen numerous autistic kids and they are all different. I don't know many but i have seen the differences. What i had to understand was that autism is the umbrella and there are many things (aspergers.....etc.) that are under this umbrella. I remember the day I knew he was autistic. And my heart is with you. It's scarey. my son in at about a 3 yr. developmental age. and though my heart breaks AT TIMES, there are many,many more wonderful, loving, miracuous moments. He has brought so much joy to my life. I have relatively experienced this disorder through him. There is so much information out there and it can be overwhelming. Just keep it at a pace and maybe read or research your present situation. One step at a time. Just remember that whatever you think is hard on you......is ten times harder on your child. I wish you the best..and for me the greatest answers i have gotten have been from mothers of other autistic children. So don't be afraid to use them.

My son was also very delayed and never had a period of time that he regressed, just progressed only in his own time. He did not walk until a few days before his 2nd birthday and did not really speak until after two. Of course every case is different but he did receive occupational therapy (they also focused on motor sensory issues)and speech stimulation therapy during the time he was 2 - 3 years old. From an infant on, he was very "fussy" during family gatherings where the noise level was up. At that point we didn't understand why but learned later that he is very sensitive to sound. He received auditory intergration therapy around 6 years of age. This helped tremendously. We were able to do this therapy at home. I'm sure you have heard this by now, but therapy in my opinion is the key. The earlier you can start the better.

My son is 8 years old now. His diagnosis is high functioning autism and it is very mild. He attends elementary school and is in a regular classroom setting. He is very gifted/advanced in the areas of reading, math, etc. He has a photographic memory to die for and this became evident by 3 years old. Now, we do still have our struggles. . . toilet training was a big one, he still self stims (hand flapping)and does still cry over minor things at school which makes him stand out from the rest . . . but we are working on it.

I remember very well how it feels when the word autism is spoken for the first time. I have spent every year since then reading books, researching online, etc and it has helped. The more educated you can become the better you will feel about things.

I hope this has helped in some small way. I wish you the best.

mlhall wrote:

I was told yesterday by a developmental pediatrician our son most likely has autism...

My son sounds a lot like your son... he was never really delayed but he was SUPER HYPER (and still is). I knew something was wrong, but never dreamed that it would be any form of Autism--he didn't behave even remotely like "Rainman", but that was the only example the media and entertainment industry share with the general public.

He was ahead as far as intellectually up until he started kindergarten, it's slowed considerably over the years--mostly due to his 1/2 day special ed classroom but that's another story. He excels in his regular ed classroom subjects. He's extremely verbal (something he got from me apparently! lol)very loving--if he's in the right mood lately, and very social. He has a lot of muscular and connective tissue problems to boot--we finally had a fragile x test run, but I'm not sure it was the DNA test or not. I'm asking on the next Dr appointment and asking for a new test that just came out.

He is diagnosed PDD-NOS, but he only lacks 2 traits for "autism" diagnosis--he gains and drops traits all the time but never enough to say straight Autism at one time.

I wish you luck and I'll pray for you and your family.

I know exactly what you're going through, after many approaches from specialists and day care providers, my 3 1/2 yr old has been diagnosed with mild autism, by three different specialists. It took that many for me to believe it, because like you my son doesn't completely fit the "mold" of an autistic child. This process will be lengthy and you will at times find yourself doubting it all. But take advantage of any special services provided to your child, as this age is crucial for development.

Thanks
We are moving forward with a formal eval (hopefully this summer). An autism diagnosis wont change the current things we are doing. We may add more though. Thanks for the support, I will definately be reading and checking in here.
Melissa

I know how very hard this is. My son never regressed just stopped progressing. It started with lack of eye contact and not responding to his name sometimes. We thought it might be a hearing problem but the more I researched Autism the more I knew the diagnosis. He was not social at all I would go into a room and he would immediatly leave. he would wander away from play grounds and other children. And He didn't speak a word. He was diagnosed at about 22 months with PDDNOS.

He will be 3 in August and is just starting to say about 10-15 words now, with the help of sign language. Which was a huge help for his speach as soon as he had the signs he had the word right behind, nothing less than a miracle. I thank God for early intervention and ABA because it has helped greatly. Not only his speach but socially also. He interacts with his cousins is affectionate gives hugs and kisses & rarely wants to be alone now. I am very greatful.

You will learn how hard he will have to work and the challenges he will have to face & you will find great joy in all of your childs accomplishments. My prayers are with your family. The best advice I can give is move forward and fight all the way.

When my son was born I could tell something was not quite right. He cried all the time, even when I was holding him. He hardly slept. I had the most difficult time consoling him. As he got older, there was no eye to eye contact. No smiling. He would still cry especially if I stood up with him. He would only sleep for a couple of hours a night and no naps. He never pointed for what he wanted, it was a guessing game. He stared at the fan blades for long periods of time. He would line up his cars and they all had to be facing the same direction, if I knocked one out of place, he would get very angry. He never spoke a word. He would whine, cry or scream, a lot. My husband and I did research on autism and kept insisting that's what he had. Our pediatrician (military) said, "there are late walkers and there are late talkers, and he's just a late talker". Luckily we didn't accept his diagnosis and we seeked a second opinion. The next doctor was concerned and sent us to have him tested. He started school at age 3 and by age 4 was diagnosed with moderate to severe autism. He is now 11 yrs old. He doesn't line his cars up as much or watch the fan blades. He is sleeping through the night. He has better eye to eye contact and is talking more. He still screams and whines sometimes if we don't know what he is trying to tell us. We truly believe "early intervention" is the key. If your gut tells you something is wrong with your child, then you're probably right. My son also has private speech and OT and is on medication. All of this, too, is helping him greatly.

Chrisola wrote:

When my son was born I could tell something was not quite right. He cried all the time, even when I was holding him. He hardly slept. I had the most difficult time consoling him. As he got older, there was no eye to eye contact. No smiling. He would still cry especially if I stood up with him. He would only sleep for a couple of hours a night and no naps. He never pointed for what he wanted, it was a guessing game. He stared at the fan blades for long periods of time. He would line up his cars and they all had to be facing the same direction, if I knocked one out of place, he would get very angry. He never spoke a word. He would whine, cry or scream, a lot. My husband and I did research on autism and kept insisting that's what he had. Our pediatrician (military) said, "there are late walkers and there are late talkers, and he's just a late talker". Luckily we didn't accept his diagnosis and we seeked a second opinion. The next doctor was concerned and sent us to have him tested. He started school at age 3 and by age 4 was diagnosed with moderate to severe autism. He is now 11 yrs old. He doesn't line his cars up as much or watch the fan blades. He is sleeping through the night. He has better eye to eye contact and is talking more. He still screams and whines sometimes if we don't know what he is trying to tell us. We truly believe "early intervention" is the key. If your gut tells you something is wrong with your child, then you're probably right. My son also has private speech and OT and is on medication. All of this, too, is helping him greatly.

This could be a description of my granddaughter, except that she has fairly good eye contact. By the age of two was spending a good deal of time just spinning around and around herself instead of watching a fan spin around.

She didn't talk until she was 4, and has days when she communicates fairly normally, and days when all she does is cry and scream - or have disjointed converations that must make sense to her but leave us scratching our heads. Like you, everyone kept telling us that she was a "late talker" and not to worry about it.

We didn't have a clue that she might have Autism. When she started Pre-K at the age of 5 her wonderful teacher saw the clues and insisted that the school work out an IEP and steered us towards getting a diagnosis. After a year of seeing a therapist who is still resistant to call her Autistic (he prefers PPD-NOS although she meets more than the required number of criteria) he is finally helping us to set up some testing with a certified doctor. Unfortunately we don't have health insurance, and the state insurance won't pay for full testing, but hopefully we can still get a proper diagnosis for her so that she can qualify for more help than just an IEP at school.

I really do understand newly diagnosed. We were paralyzed with fear at first. Our son is 5 and did not fit the exact profile either. He is very lovey and seeks his peers. Jacob also has huge digestion problems. We finally found a neuro dev pediatrician who did blood, hair, urine, MRI and EEG and than we began our road to recovery. Our little boy has HFA and Apraxia. His success is amazing.

Jacobs Mica-Kelly

www.autismshowucare.com
Believe in a cure.....