My young son may have this

[Stargazer09]

Any insights would be greatly appreciated. Matthew is two and a half years old, and he's severely developmentally delayed. It's mostly a physical problem, some sort of disconnect between his brain and his body. Cognitively, he seems normal for his age. He likes puzzles, and he has quickly picked up the concept of using flash cards (PECS) to communicate. Unfortunately, his body doesn't seem to work well. He can't talk, he drools, and his muscle tone is extremely low (it's like dressing a rag doll most of the time). He can walk, he can play with toys, and he tries to talk.

We are getting him evaluated by the local children's hospital, and during their prescreening, they recommended that he also get evaluated by the local autism clinic. Both evaluations are in February of next year.

Matthew is receiving services through our local school district, and those seem to be helping. Any other suggestions on where I can turn for help? Any recommended websites? Services that may be available that I don't know about yet? I want my son to reach his full potential, regardless of the diagnosis, and I'm willing to do whatever I can to reach that goal.

Thanks!

[NC_Nurse]

1. Search the Autism Society for your state.

They will have lists of local services, resources, etc.
It sounds like he may be on the autistic spectrum; there are many other disorders that are related.
Good luck with all the tests and hang in there! It really helps to have a diagnosis so that you can learn
about the specifics your child needs and find the right resources.

Make sure you get all the help and support you need. having a special needs child can be very challenging. It's great that
he's getting early intervention! :hi:

[Stargazer09]

5. Thank you!

After all of the reading I've been doing, I think you may be right about him being on the autistic spectrum. He does not fit the "classical" definition, but he probably falls on the spectrum.

I'm looking forward to finding out exactly what is wrong. He is my seventh child, so I picked up fairly quickly that something wasn't quite right with Matthew. It's been a long road to get to this point. We wanted to make sure that we were not panicking over a simple developmental delay. Now that we know for certain that he needs help, I've done all I can to get him the services he needs.

Thank you for your advice!

[BlueStorm]

2. Also the National Institute of Mental Health's website

might provide an insight into what your son is going through.

When I was little I had some psychomotor problems, as well as the staring thing. I didn't really start speaking until I was four.

There should be resources where you live that would help you.


Blue

[Stargazer09]

6. Thank you!

It's nice to know that he may grow up to lead a fairly normal life, despite his early difficulties.

Thank you again for your support!

[MannyGoldstein]

3. Questions

Does he make eye contact? When he tries to talk, does he try to talk to you?

[Stargazer09]

4. Yes, but not always

Matthew makes eye contact with people he knows well or feels comfortable with. Strangers make him very uncomfortable, and he will hide his face from them.

He does talk to me, and to other members of our family. He also talks to the therapists who come out to the house (part of his team from the school district). However, what he says is not often understandable. He has a lot of trouble making his mouth form the sounds. For instance, yesterday, he came up to me and said, "uuu eeeee n ee-yah!" I was able to figure out what he was trying to say when he held up his Buzz Lightyear action figure--"To Infinity and Beyond!" Without the toy, I would not have been able to figure out what he was trying to say. Context is everything when trying to understand him. It's obvious that he's trying to talk, though. He will try to say "thank you" when I give him something he wants, and he will say slurred versions of "I love you" and "Bye-bye" when appropriate.

I think he's intellectually normal, but a lot of his problems seem to stem from his physical limitations. He has also been extremely sensitive to certain stimuli all of his life, while at the same time, he is under-responsive to other stimuli. We've been told that he has problems with sensory integration, so I've been trying to increase his abilities by making sure he has a wide range of sensory objects to play with (noisy toys, musical instruments, a big bean bag pillow, soft fuzzy flannels, scratchy brushes, etc.).

[MannyGoldstein]

7. FWIW, Doesn't Sound Like Autism To Me

This is a complicated area, and there's virtually no science in this field - just lots of speculation. (This is true of most psychology).

I'll give you my take on all of this from what I've been able to glean from the tiny bits of actual science that are out there. I'm not a doctor, but I am deeply involved in medicine.

There is an actual disease called autism. 80-90% of victims of this awful disease have mental retardation, and a raft of other distinctive behaviors, and typically either don't care about interacting with other people, or hate interacting with other people. The fact that your son wants to interact tends to indicate that he's not autistic.

Beyond true autism, there is allegedly an "autism spectrum" - people who supposedly have some degree of autism. There are even "official" labels for some conditions on this supposed spectrum - PPD-NOS and Asperger's Syndrome are two common ones. The short story is that, despite what everyone hears these days, it's not clear that an "autism spectrum" exists.
1. it hasn't been proven using anything resembling science
2. it very difficult to get two clinicians to give the same diagnosis - one might say a kid has PDD-NOS, a second might diagnose the same kid as having Aspergers, a third might say the kid's fine.
3. it's currently the diagnosis du jour - almost any kid that's "a little different" is getting labeled as having an "autism spectrum" disorder. If you go to some autism services, say, Children's Hospital in Boston, they'll label a potted plant as having some degree of autism - it's the "in" thing to do.
4. There's no treatment that's been shown to change outcome.

Also note that as of a few years ago, there was only one test that had been shown to have any predictive validity for future "autism-like" problems when used in toddlers - the MCHAT (Modified Checklist of Autism in Toddlers, I believe). When used on a young child, predictive validity is the only thing that counts - that's what tells you what your child will (or won't) become, not what he is now. .

For whatever it's worth, if it were my boy, I'd take him to a few doctors - say a pediatric neurologist, and a good pediatrician or two or three. Psychology on a toddler is really a stretch - probably not useful until he's five or so. Try to go to a teaching hospital. And always be suspect of psychologists - there are some good ones, but most deal in wild guesses - even at teaching hospitals.

Good luck! Most problems turn out to be nothing - just kids being kids, developing along different paths - they all tend to converge at about five, before that they're all over the place. But do get it checked out, particular the physical issues.

[Stargazer09]

8. I understand how you feel

There's the classical definition of autism, then there's the huge spectrum that seems to encompass almost everything under the sun.

Where Matthew falls in with this is anybody's guess. He doesn't fit into any one thing. He is currently seeing a general pediatrician (for every day things, like illnesses and such) and a developmental specialist (who is the one who recommended the autism screening). Matthew will see an entire range of pediatric specialists in February, including neurologists and other medical specialists who deal almost exclusively with children. About two weeks later, he will be screened at the autism clinic by the specialists there.

If labeling Matthew as autistic (or whatever) gets him the services he needs to reach his full potential, I am not going to complain about it being the diagnosis of the day. He is not "normal," no matter how you look at it. If he just had a developmental delay, then you'd expect all of his abilities to be delayed by roughly the same amount. But they are not. There is something wrong. I don't care how it gets labeled. I just want him to get the help he needs, and I want to do it now, when the connections in his brain are still being made. If there is a chance that we might be able to prevent this from getting worse, I am going to do whatever it takes to help him.

He hasn't been to any psychologists. His problems are physical, not emotional or psychological, so I don't see any need for a psychologist right now (no offense to any psychologists out there). Now, he may see one in February, as part of his medical workup, and that's fine with me. Later on, as he grows up and realizes that he's different than other kids, a psychologist will be a huge asset in helping him deal with those feelings. But that's in the future.

Thanks for writing!

[thedeadchicken]

9. Hi

For what it's worth, your son sounds a lot like I did when I was a child: I, too, hid my face and avoided eye contact with strangers (the eye contact issue is still a pervasive problem to this day) and had problems speaking, remaining with a speech pathologist till I was 9 despite the fact that there was nothing physically wrong with me. The most important thing is that your son is displaying at very least normal intellectual activity--it may be difficult, but as long as that is the case, nothing will be insurmountable and there's no reason to expect that your son won't be able to grow up and lead a successful and happy life despite those difficulties.

[bloom]

14. The other thing

is that it is completely possible that your son has more than one thing.

He may have some issues that are explained by the autism spectrum and other things may be something else.

That sort of thing makes it really confusing to diagnose. Everyone is different anyway - but if your son isn't fitting neatly into a particular category (including symptoms outside of what is normally found) - that might be why.

[bloom]

13. How I see it

Someone who has Asperger's (and maybe what people normally think of autism, for that matter) may have or not have any of the sorts of things or not - to varying degrees.

So mental retardation or not has little or nothing to do with it.

Interacting with close family and not so much with others - seems like something that is probably fairly common.

I would expect that people who are participating in this forum are clear that the autism spectrum exists - or we wouldn't be talking about it. (Any diagnosis of anything is a label that exists to help people understand a certain collection of symptoms - and most of us know that these symptoms exist - whether you do or not).

[Pithlet]

15. With my son, I could always understand what he was saying.

His pronunciation has always been good. I think he was even better than average as a baby/toddler. It was his speech patterns that were off. His pragmatic skills were off from the start. For example, he wouldn't answer a question posed to him, but just repeat any question directed at him word for word. Me: "Are you hungry?" His response: "Are you hungry". When he was hungry and wanted something to eat, he would come to me and say "Are you hungry". He never referred to himself in the first person with "I", or "Me", He's almost 6 now and doing much better after a couple of years of speech and occupational therapy. He almost always refers to himself directly now, and will actually say "I'm hungry". He still doesn't do very well with who/what/why questions, though. When your son's speech does become more clear, watch out for things like that. At his age, the fact that you can't understand everything he says isn't too troublesome, but don't hesitate to get him evaluated if you have any concerns. The sooner they get intervention, the better off they are for any speech issues whether they're related to PDD or not.

My son also has sensory integration issues. That doesn't always mean asperger's but from what I understand that is a very common trait. With my son it's sounds. It's not uncommon to see him clamp his hands over his ears. When he was little, we couldn't go near water fountains or waterfalls or he'd flip out. He also has fine motor control issues, and poor muscle tone.

[oregonjen]

10. My co-worker's son was diagnosed with autism

At 2 1/2 yrs of age, his eyes would roll back, couldn't communicate well, etc. There is a program she used for 2 years to help him. It was basically 24/7 for two years. The idea is to overload the child with stimulation all day, everyday. She would wake with him and then go to bed well after him because of the planning for the next day. Using a book with tons of learning materials, she was able to pull him out of his autism and now, at age 8, he is doing so well. You would never know by looking and interacting with him, that his symptoms were so severe. I admire her so much. She literally put her life on hold and devoted those 2 years to helping him. When he reached kindergarten, he was able to join his fellow classmates with a little help from a developmental specialist. Now, he needs no services. If you are interested in the name of the book she followed I will ask her and get back to you with it. What I do know is that time is of the essence. You need to act now to help him.

[Stargazer09]

11. That may be helpful!

Matthew does get a lot of stimulation during the day (I have a large family), but any extra advice is always welcome. My life is already on hold, and I'm not afraid of some extra work.

Thanks!

[Stargazer09]

12. MapMaker, I saw your post

On the Oregon home page. My husband and I have read parts of that book, and it was very helpful. Unfortunately, Sensory Integration Disorder is not yet an "official" diagnosis that can be used to get support services for Matthew, so we are continuing our quest for some sort of diagnosis that people will understand.

His reflexes are so bad that he can't catch himself when he's falling. We spent last night in the ER; it looks like the poor boy has a broken nose.

Thanks for taking the time to find a way to reach me! :yourock: