I want to cry. I don't know what else to do.

Contact two posters on this board, des and Dad, who know a lot about all forms of autism. Des has said that there are forms where the child does have eye contact; it is not a definite no sign. This might be some form of PDD, and if it is, especially considering that your child is communicative, it is treatable.

Whether your child has autism or not is difficult (ok, near impossible) to tell from what you have described, and it would be reckless at best for anyone to diagnose a child online. I suggest you get a referal to the nearest Children’s Hospital, where a qualified and experienced developmental psychologist will be on staff and fully able to give you a diagnosis.

Victoria is correct that eye contact is not a definitive diagnostic criteia, neither is sociability. My boy is clearly autistic, and yet he is very loving, affectionate and sociable (if in sometimes innapropriate ways).

It is not surprising that the schools have been less than helpful, or that they cannot find anything wrong with your boy other than delay. Since he is 3, he would qualify for services through the schools, and were they to label him autistic it would mean intensive services to meet “appropriate” guidelines for autism. The gatekeepers in the schools tend to drag their heels for as long as possible to conserve the all-important budget (Grandma would have called this being “penny-wise and pound-foolish).

Two things you can do right from the git-go while you wait for your diagnosis is to have him screened for metals (lead, mercury, antimony, cadmium, nickel, copper, aluminum, arsenic) and treated if elevated and to try the GFCF Diet (see www.gfcfdiet.com). If you wish to discuss this in more detail either on board or off just give a shout.

Good luck to you!

I won’t say ‘don’t cry’, cause of COURSE you are frustrated and I think a good cry can help! But you are on the right track…as Victoria said, we have a couple of folks on this site who are very knowledgable about kids with problems similar to Noah’s. DON’T listen much to the teacher — she is not a neuropsychologist, nor is she an autism specialist, and her opinions don’t matter!

His language IS delayed, but as Victoria said again, there is plenty of help for him out there. It is frustrating sometimes, getting to the source of the help — but you will get there! He is very young, and you have lots of work ahead, but he will doubtless improve with the right interventions.

While you wait, search out all you can read on the different disorders. This site has lots of good articles. YOu could also try this site: www.conductdisorders.com. It has great forums and some knowledgeable parents with kids of a ‘wide variety’, also some great articles and links.

This reading and research does more than keep frustration from overwhelming you. It will help you search out the right professionals to help you figure out what is going on with him. He needs a full evaluation by the appropriate specialists — these disorders are complex and confusing, and every child is unique, so don’t rule out ANYTHING at this point — and, as I said, DON’T listen to well-meaning but ignorant lay-people. Even many professionals get these things wrong…that’s why it’s good to have an understanding of the different disorders, so you can judge the accuracy of professional opinions.

I’m sure others will jump in as they discover your message, so I will leave anything further to those more expert than I. Best wishes!

I need to understand more of what type of special ed he is receiving-most prek special ed programs inthe US have speech therapists on staff. He should be legally entitled to AT LEAST an evaluation from them

I would get him to a developemental pediatrician or neurologist-probably the neurologist first. The movements and tiptoing point to at least neurological immaturity. Some of the other things you mention do correlate with spectrum disorders.

Have you done a search on Sensory Integration Disorder? Might be worth a shot-or reading the “out of Sync Child”

Kids with SID are often overly attached to their mothers as they are so insecure with the sensory input the world is throwing them. SID also has a lot in common with autism

Was there a birth injury or prematurity?

Our regular doctor for Noah has giving us several referrals for Noah to see a developmental psychologist but every single one of them will either not except our insurance or there is a three year waiting list. EEkkkkkkkkkk. Is it this difficult for any of you to get a developmental specialist????????? Also, I wanted to state that Noah has a word retriaval problem. I asked him what he did in school today and his answer was: ” Noah”. Then I asked him if he liked school and his answer was’ ” mommy’

Sometimes he also has these melt downs (temper tantrums) they are so bad that there are times I’ve walked out of the store crying. One day we went to walmart and it took two visits and three hours of getting him to smile to take his picture. I don’t think he understood when we asked him to smile. then he took a tantrum and started pulling my hair out of my head. I walked out of there crying. Needless to say.

I’m tired of crying. I wished this night mare would end. I love my son so much and I just wished that I knew what to do to help him. I feel so helpless. I’ve tried every source I could find.
There is one good thing out of all of this is that I was able to get an appointment for him for a speech and language evaluation but they told me that if he needed services or therapy that I would have to go some where’s else because our insurance will not cover therapy. eekkkkkkk
The date is for Feb 11 and it is not soon enough

I’m sorry for rambling again. I just don’t know where else to turn.

where are you located?

Sometimes you have to find a back door. I know that here no one will accept medicaid or KidCare anymore unless you are an established patient. We do have one medical center for low income families but the waiting list is 4-6 months long. It’s really quite sad that medical care in the good ole USA has become so unattainable

But I know people who have traveled out of the area for health care. Are there any options like this for you? What is the school saying? Again, it seems like there ought to be a back door SOMEWHERE

The school is saying that he is developmentaly delayed. They do not feel s thought it is autism because he does not do echolialia. There fore they find it not nessary to evaluate him any further.

The school is saying that he is developmentaly delayed. They do not feel s thought it is autism because he does not do echolialia. There fore they find it not nessary to evaluate him any further. We have state medical for our son. My husband worked at federal paper for 30 years and lost his insurance last year. We are trying to get it back. I’ve thought of going back to work just for the insurance but with our son being sick and having these problems my husband feels the best thing that I can do is be home for him and try to take care of our son.

ASk to be put on the waiting list for a cancellation for the developmental pediatrician. I did that to see a neurologist and we were in six weeks rather than 6 months. I had to drop everything I was doing the day they called but it was worth it to get answers more quickly.

Beth

Again, echolalia is NOT a binding criteria for autism or Spectrum conditions. Many children with autism display echolalia (which is actually a developmental stage in language that autists can get “stuck” on), but other autistic kids do not have echolalia.

This is a perfect example of why I dislike allowing the schools to conduct their own diagnostic evaluations. Children with DD’s should be diagnosed by experienced professionals who do not have a tie-in to the public schools.

I will gently nudge you again to please have your child screened for toxic metals and also to consider trying the Diet. Please keep us posted how things go…

Definitely go for a developmental evaluation any way you can.
Is there a university hospital anywhere in reach?
Try going online AND in the yellow pages of any city in your reach and looking for any organizations that deal with developmental delays, PDD, autism spectrum disorders, etc, etc and then call these organizations, join any parent groups that are free, and keep researching options. Sooner or later you will find a parent who has been where you are and who can steer you to the right people to get evaluation and treatment. Even before you get a complete evaluation you may be able to get the child into good preschool groups.

Hello, I’m new here too. I just want to say that I’ve only read a few of your comments so far and I think you’re describing my son, Nate who is also 3! I could go into all of the details, but I’ll just cut to the chase……..

Nate goes to a private-pay preschool and obviously has some delays. We were referred to a neurodevelopmental center for evaluation. Luckily we do have good insurance, but…..TODAY one of the evaluators called me and told me that Nate needs speech therapy, like, yesterday. She gave me the number to our local board of education where they have a government funded program like HeadStart for Preschool Special Needs. They have various centers around the county depending on his needs and it’s FREE! They will do an evaluation and he needs to be 25% delayed in 2 out of 5-6 categories and he qualifies. Then they have 80 days to complete the evaluations and enroll him. Again, FREE! Then you can work on getting an appointment with the other developmental specialists. We can’t be seen until March at the earliest.

Please email me if you’d like to trade info because I’m new to all of this too! I’ve known for a long time about Nate, but I’m new to the system and how everything works. I will be happy to try and help you in any way and if it helps to have a buddy through this I would sure appreciate it myself. Again, anything I can do……………..

I wasn’t logged in for the previous message, I’m the guest in the same situation………….

I certainly can DX autism but his teacher can’t either. What’s more the school psychologists can’t. Request a full evaluation from your child’s early intervention program. They must evaluate him, it’s the law. But you have to put the request IN WRITING or they can ignore you as long as they want. If your child does have an autistic spectrum disorder, there’s no time to waste. If you are not satisfied with the evaluations given to your child you may request private evaluations IN WRITING to be paid for by early intervention. Get as many hour a week language intervention as possible. Good Luck. I’ll check in later. I have to run.

Hi,

Well all you can definitely tell from your posts that your child has a language delay. Nothing definitely says autism to me (not that I could diagnose on line anyway) but nothing doesn’t say it either. Eye contact is difficult for some autistic kids but not for others (also might be situation specific). Sociability itself isn’t a sign that he isnt’. Many autistic kids are sociable, it is more than they aren’t adept at social cues as ohter kids.
Ecolalia is only a sign with other things that are characteristics. Ecolalia just is a sign that the child needs to hold unto language patterns. Kids with language delay may do this.

OTOH, IF it is autistic spectrum this doesn’t at all mean that he is on the low end. People at the higher end, often do pretty well. Some people at the higher end do have significant language disabiltiy as children but don’t shut up as they grow up. That would be my nephew who did not have good language use til he was about 7 or so.

A *good* evaluation would be important, but not always terribly reliable without language. There are tests, but the testing itself requires some degree of intact language even if the tests are nonverbal in nature. (My nephew, for instance, did not understand why he needed to put the little beads into the bottle one at a time, funneled his hands and put them in all at once. To me this would be indicative of intelligence, but they didn’t see it this way.) This is why a good tester is necessary.
I would say that good intervention in terms of a speech and language pathologist with LOTS of experience with language delay would be very important at this point. Don’t just pick one out of the phone book. Call the local Assoc. for Speech and Hearing, and find a specific person who has these skills.

You can also help him a lot by talkign to him in very short (like telegraphs) sentences about things around him. Expanding his speech, for example if he says “go” for “go in car”, you say “Go in car”.

—des

I’m back. Just wanted to add that who, what, where, when and why are hard concepts for children with language delays but early intervention can help a lot. My son is 7 years old. He is high functioning autistic. At 3 years old he was just learning to call me mommy. He was in early intervention for 3 years. He was mainstreamed in kindergarten. While the other children were learning to count with one to one corolation (which my son could do at 2y.o.) he was doing square roots. He has still never had a play date that was arranged by his or another child’s request but he plays great with his older brother. He is still getting speech from a therapist who specializes in autism (privately because the school district doesn’t have anyone qualified).

I won’t lie and say it’s been easy but truthfully the hardest part is advocating for an appropriate education. My son used to tantrum several times a day but now his tantrums are rare. I think he’s actually better behaved than most children. He just behaves differently is all. When he’s upset, it’s not just a little bit. But really, he’s wonderful most of the time now. Three cheers for positive behavioral plans.

So if your son does end up with an autism label, that doesn’t change who he is at all and it doesn’t tell you his prognosis at all.

I’d suggest reading Wright’s Law books to learn how to advocate for your son. Also, one of the best books I’ve read is “Overcoming Autism.” It has a lot of great, concrete, ideas about helping children make progress and not just autistic children.

Our son does repeat what we say. It just is not the whole sentences. For example: If we give him a drink and tell him to say thank you he will in turm say;” say thank you” or if I say to him come here he will in turn say,” here” The teacher told us that this was not echolilia. I do not agree with her. But what do I know I’m just his mother and she is the professional whom deals with this stuff all the time. Our son also has non - epilepic seizures and a movement disorder called chorea(PKD) He is hyper and at times aggressive. He doesn’t mean to be but can’t control his energy. He also has a separation issue. Big Time!!! I’m thinking of pulling him out of the pre-K special ed program because it is a constant struggle to get him on the bus. He screams, kicks, cries every time I get him on the bus. the teacher keeps telling me that it will take time and he will eventually get used to it but he hasn’t and it’s been two months. Sometimes I think he is just not ready for school and maybe he is just to little. Friday I sent him to school and he became catatonic and had a seizure. I went and picked him up. He was non-respondent. I don’t want him to be any more delayed then what he is that is why I put him in school but I don’t want to tramuatise my son never. I don’t know what to do???????? By the way I was able to find a doctor at John Hopkins that specializes in movement disorders in children. We will be paying for the visit ourselves. I’m really excited about our visit. I feel like now I’m finally getting somewhere. I just have not been successful in finding a developmental specialist and that is what he seems that he needs the most. By the way Dad I will ask the doctors about the metals in his blood and I will check out the diet. The doctors want to up his medicine because of the last seizure on Friday. I hate the thought of giving him this medication. It helps but then there are other issues now that he has never had before like stomach aches.

I think exploring the medical end is a great idea-it appears to me that it would be quite difficult to sort out what NOT related to the disorder.

Children learning language often repeat the tail end of what is being said so ‘here’ after hearing ‘come here’ would be quite normal. “say thank you ’ is a bit odd but if its rare or isolated to certain phrases hes managed to absorb incorrectly, it doesnt sound like echolalia

I hope you find out a ton from your visit!!!!!

Can you dirve him to the prek program? Would it make it worse or better? As hard as that separation is, how is he once hes there?

He can always go next year assuming he continues to show qualifying delays-you cant be penalized if you pull him this year and want to return in a year.

Is just going to a school for speech an option?

Some Head Starts have ‘home visitors’ and a setup where the kids can come to the facility with/without parents a couple times a month.

They often work pretty closely with the schools special ed dept as Head Start is SUPPOSED to have a certain % of kids with special needs. I have known them to take kids WAYYYY out of the income range in order to make that %

noble — something very important that you have to learn now while your son is still young. The “professionals” working with your child are often NOT very well-informed. Some do try very hard to understand, others are so overloaded that they simply can’t keep up with all the new information, and unfortunately quite a few think that a one-semester general survey class in special ed makes them experts who can tell everybody everything.
Never take a single teacher’s statements as the final word, especially when that teacher is clearly not reaching your child. And even when you get to the specialists, a second opinion is often a good idea.

I can only hope you do better at Johns Hopkins than I did; I got the classic runaround and some really condescending treatment. With luck you will get better people, and remember to assert yourself positively but firmly.

As far as separation problems, I don’t know if you have other small children etc., but if you can possibly free yourself, one of the best methods is to go to school with your child for a week or two. Once he relaxes and finds it’s an interesting place with fun things to do, then he will want you to go away and get out of his way.
The “he’ll get over it” advice is good in general with ordinary kids with an average kind of separation anxiety. This isn’t where you are, so don;t feel guilty or pressured about it.

Good luck with Johns Hopkins. My child has, among other things, a movement disorder. He saw a doctor at Johns Hopkins who was absolutely fantastic. She was able to explain to us how his coordination problems and emotional control problems were tied into the same area of the brain. She diagnosed his very subtle but very disabling ADHD. She is absolutely on the cutting edge in this area and knew exactly what the research was into various treatments. Learning what was at the heart of my child’s issues made it so much more possible for us to address those isssues effectively. Having a report from a well-known, well-respected expert also seemed to impress school officials. They always accepted all of our testing without question and without additions. We were also fortunate to encounter two teachers who believed in my child and did their best to help him. Of course, some teachers are resistant to the notion that learning issues can be understood in biological terms and that having a sense of the organic cause of the problem can be useful in deciding how to address that problem in the classroom. That is understandable — their training and their mission ( if they are good teachers) focuses on methods to achieve progress rather than analyzing causes for learning delays. Sometimes teachers resist what doctors have to say because they feel that the doctors are intruding into their realm or that the doctors don’t have a real world understanding of what it takes to teach a child. Some doctors think that teachers are more interested in cookie cutter approaches and resistant to interventions that they have not heard of before. Teachers think doctors live in the land of the theoretical. Doctors think teachers define what works based on their own experience rather than on research across a broad population of students. These inherent biases can make your job as a parent harder, but it sounds like you are up to the task.