I'm battling to get my son a proper diagnosis but I'm having trouble getting many medical professionals to listen to me.
My son is 3 years, he will be 4 in October. He has a bad speech delay. He started speech therapy in April and he is rapidly progressing. When I say he has come a long distance in a short time, it's an understatement. His therapist said he has already surpassed all of his goals and she had to make a new list. His pronounciation is terrible, but he tries. He will try and try to tell you something, and when he knows I can't understand him, he will find other ways, like telling me the color, or a word related to it. He's quiet clever. Other than his speech problem, he is right where he should be in all other milestones. He's actually ahead in some. As far as cognetively, he knows his ABC's, can count to 5 but tries to go higher, knows all colors, animals, etc. He loves to play, sing, dance, be cuddled. We suspect a hearing problem, because while he can hear, he gets words that can sound similar confused often. He can't locate sound at all. I can bang on a window 5 inches from his head and he will look around and can't find me. He does startle at sound and never has. But he passed a hearing test of pure tones in a booth, so I can't get any one to try different tests. He pronounces things like he has a hearing problem. Only parts of words, or sounds. Like four, he says hawr. Monkey is onkey, I could go on. Red, ready, read, he doesnt seem to hear a difference. But if HE says it, he gets it right. So knows the meaning is different, but I don't know. It's hard to explain.
Here's the problem, he is afraid of the doctor. He clams up as soon as he sees a clinic or hospital. So he does terrible in evaluations. I keep hearing autism, based on how he acts in an eval, but he has no symptoms when he is in a normal setting. I took him to a large hospital and had what was supposed to be a developmental eval (we were supposed to meet 3 doctors but only met one nurse practitioner). The nurse practitioner told me based on my answers he doesn't have autism, but based on what she saw in the evaluation, he has a severe form of it and will never lead a normal life. She said he talks like he has hearing loss, and acts like he has hearing loss, but since he passed the test in the booth, he can hear fine. She said if he had a hearing problem that he'd be MORE into his enviroment and would have been very interested in her. But since he's afraid of medical offices, and we were stuck in a tiny clinical room with her for 3 hours, he didn't want to play with her. She didn't listen to me at all. She talked down to us and told us our answers sounded like we were lying, because he was being so uncooperative. My husband was pretty upset when we left because of the way she spoke to us. She kept telling me that she could tell I'd done research and that it was a bad thing and I shouldn't be asking questions. (because I asked about ADD or ADHD or learing disabilities.) Her only methods she tried for interaction were she had a magnadoodle, a car, and one piece of a train. She said the ONLY reason she wasn't giving a firm diagnosis that day was because of our answers.
I've taken the PDD-NOS test and he was borderline for a mild case. She told me that was stupid and she was smarter than a test and that he wasn't smart enough for Asperberger's, and that he was far to severe for PDD-NOS. So I went to the autismspeaks website and took the MChat (?) and giving truthful answers on his normal behavior, he didn't even come up as needing to be evaluated.
My son, other than his speech problem and this grunting sound he makes when he is stressed out, acts like a normal kid. Why am I having to fight so hard to get someone to help him? He obviously has something going on, hearing problem? ADD? maybe a milder case of autism? But no one will listen to me. To be told your kid has a severe form of autism and to be handed pamplets and shooed out the door and told you have a long hard road ahead is wrong.
I'm venting, and I'm frustrated. If anyone has been in a similar position or has any advice, I'd be glad to hear it. We start OT this week. I don't see how he needs it, but I took that NP's advice and made an appointment. She said he needed it because he laid in the floor to eat a cracker. (he'd been awake since 5am and had driven 2 hours to the appointment and it was lunch time. He doesn't normally lay in the floor unless he is tired.) He has no issues with food. He has no issues with sleep. He just can't talk clearly and has a hard time sitting still.
I am not sure where you reside, but if you are in the US is the ST through a birth to 3 program? I only mention this because sometimes the evaluations are in a classroom like setting where the school psychologist evaluates the child with peers. But, you must remember that you are simply looking for another professional to observe because the school will look at how his disability affects his education not home life. Will he be transitioning to a public school this fall? Also, maybe see if you can find an autism group in your area to ask for referrals of professionals who can properly diagnose a child. If anything, having someone experienced in ASD can at least rule it out and possible look into other issues relating to auditory processing disorder or related. The docs have ruled out that he has any oral problems, ie mild cleft palate, right?
It is a really good sign that he communicates and attempts to communicate in different ways so you can understand.
I hope you find the answers you seek. Good luck. This is always such a difficult phase.
Two things I would immediately want to know.
1. Did they do a tympanometer hearing test for your son? It is a test where they put a small nozzle in their ear and it blows air on their ear drum. It is the only way to tell if there is fluid in their middle ear - a doctor can't simply see it. Many kids can pass the booth test with flying colors and still not hear right because of fluid. I have heard this kind of hearing issue described as being under water. If they didn't do this I would get it done asap.
2. Can you see a developmental pediatrician. That nurse sounds like a nightmare. I would absolutely and immediately seek a second opinion. A nurse practitioner is in NO way qualified to diagnose anything. I would highly, highly recommend going to a good developmental pediatrician. Not a child psychologist, not a speech therapist, not even a general ped. Only a developmental pediatrician can really take a look at all the things going on and help you figure out a road map to help your son.
About autism - I have two thoughts. First, trust your gut and seek the right experts. If it doesn't make sense to you, follow up. Seek help from people who are good clinicians, who are neither quick to label, nor adverse to labeling kids. Second, there are many things that can cause language delays.
I'm sorry you had such a terrible experience. I hope you find answers and someone who can be on your team as you help you son!