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Undiagnosed, Not understood

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Old 10-07-2010, 04:01 PM   #1
Join Date: Oct 2010
Location: Florida
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inkmuse HB User
Undiagnosed, Not understood

Excuse what I know will be the length of this in advance. I need people to talk to who will understand. Hopefully.

My son got sick when he was 15 months old after receiving a vaccine and lost the small vocabulary he had. He started banging his head, throwing abnormal tantrums, self injuring. We got him help--he started receiving occupational therapy, speech therapy, brushing protocol, and behavioral therapy. He had severe sensory issues (sand, grass, being touched at all, and especially his hearing), and easily overstimulated, sometimes it seemed like he couldn't hear you.

up to age almost 4, he couldn't hold more than 5 words (if he learned a new one, he lost an old one) his speech is poor (hard to understand) poor eye contact. Wouldn't potty train. severe behavior issues. stacking, spinning, lining up objects. weird twitchy movements (often with his hands). Verbal outbursts (just randomly yelling out a word and running off). Poor coordination, couldn't self feed, couldn't drink from an open cup.

We started him on a gluten-free casein free-diet, and it's like he is another kid (almost--our problems are FAR from over). But, immediately he became capable of potty training. At age 5 (so in about the last year and a half) he now speaks as much as other kids his age (but hard to understand), and behavior is *better*. Every time he eats foods he shouldn't, he ends up having terrible outbursts, potty training accidents he doesn't have otherwise, and even loss in skills. He can now count to 5 (but no higher and not consistently) but can't do his ABC's, though he does know his letters and can write them with help. He can write his name, but gets very "stuck" on things. He often insists he is doing what you ask him to, even when he's not. He makes eye contact now and is more affectionate, though still doesn't do well with children. He OK with them, sometimes, more his siblings, but 95% of the time he plays better alone or with adults, and is more receptive to adult affections and wont accept affection from peers.

He struggles to keep his skills. Sometimes he makes regressions and we have to work hard to earn those things back while still learning new things. It's not easy for him. He still has bad outbursts in behavior, which are terrible at school, and ENTIRELY related to overstimulation and sensory issues. (Wearing a snug jacket or weighted vest helps him sometimes too.) Once he is overstimulated, he becomes blatantly defiant. You can't get him to listen until he calms down, and that requires getting him somewhere safe where he can be away from the stimulation and alone.

Me and my son work well together. I love him no matter what and I don't care what label he ends up getting. (we JUST got insurance and are finally on the road to a diagnosis in hopes he can get more services)

But my MAIN PROBLEM is this: His teacher only knows the Joey of THIS year. She sees a kid who can be affectionate, who CAN behave, who CAN pay attention, but who has outbusts and a hard time focusing sometimes. She looks only at the behavior, not at the cause. She tried to tell me maybe he has oppositional defiant disorder. The problem is she is trying to go toe to toe with him and thinks his problem is a lack of discipline. (I have 3 kids--I know this isn't the case. We don't believe in spanking, personally, not judging those who do, but we DO discipline and we ARE consistent and it IS effective in our house) I don't think the source of his behavior is what she thinks it is. But she thinks because she knew ONE kid with Autism, that my son can't possibly have Autism (even thought his Dr. and Psychologist both think he is likely high functioning autistic who is simply responding to the diet treatment and early intervention). But it's hard getting the school on board because they say "this has nothing to do with his problem. it's entirely behavioral." they say he is doing fine academically (to which I wonder what standard they go by! yes, he is high functioning, but my other kids are typical. My daughter who is 4 has been counting to 10 in to different languages for a year now and knows her ABCS. She may be a little advanced, so I don't compare, but I don't think it's "typical" that a kid who has been learning to count in a school environment for over 2 years can only sometimes count to 5)

Anyway, so the teacher thinks she needs to show she is the one in control. Sadly, I don't think that is what she is doing because she goes toe to toe with him. The other day he broke a dish of hers, so she broke his plastic fireman's hat. OK--I'm sorry her dish got broken. And I'm not saying the hat shouldn't have been taken away or some consequence, but isn't it a bit childish to break something of his in return? the way he understands these events is different then the way he does. And for the record, SHE told me she did this, so it's not something my son misrepresented. I was so shocked I didn't even know what to say.

I'm afraid to complain, because NO other teacher in the school is willing to have him in their class. Things are that bad. but they need to consider the source, not just the manifestation of his problems.

His psychiatrist is starting him on Intuniv, which I guess is for ADHD and has been used for Autism at times as well. I'm nervous about it, to be honest, but my main concern is that because my son has made progress, it's going to be harder to get people to understand what he is dealing with. I just know if I took him off his diet we'd see severe regressions in every area, but I won't do that to him. It's bad enough when he accidentally eats something he shouldn't. We can't afford the kind of regression we might see from taking him off his diet, and yet, I feel like people need to look AT HIS HISTORY and the "treatments" he is receiving/has received when considering his problems.

Also, I want to tell his teacher that 'If you've met one child with Autism, you've met one child with Autism.' She doesn't seem to understand this. We know how to work with my son. It's not about giving in to him, it's about getting him to the point that he is ABLE to control himself and absorb the situation. It takes work. I don't think a typical classroom is right for him, but without formal diagnosis, there's nothing we can do.

We hope to get a formal diagnosis soon, but in the meantime, I just need people to talk to. Maybe someone whose been here before or someone who knows what I'm going through. Just because a child with Autism shows significant improvement, that does not change the core of who they are and what drives them. Yes, I do think my son has Autism. or PDDNOS. He doesn't just have" behavioral issues. Sorry, but behavioral issues don't cause you to have accidents when you come off the 'Autism Diet'. Nor do behavioral issues cause you to have sensory issues, get easily overstimulated, or any of the other things he's been through. behavioral issues are a symptom, not the problem. And his teacher's method of trying to "discipline" him in school is making his behavior WAY worse because he doesn't understand.

I'm starting to consider homeschooling until we can get a diagnosis and get him in a different schooling system.

Anyway--is it just me? If it's me, tell me. I'm tough, I can handle it. Does anyone know any autistic kids who are like my son? who started to do better in some areas but not others (so they don't SEEM autistic anymore?) His doctor said it's not aspergers, but he isn't exactly "obviously" autistic, but that he's probably on the spectrum, which can include all sorts of things. She mentioned her concerns it was Autism before I even told her a word about him--just from seeing him. but once I told her his history she was more certain. I tend to believe her because I had a feeling all these years, but also because she knows what she is doing. She's come highly recommended to me by other parents with special needs, and her office ONLY accepts special needs children (they specialize in this area).

But are me and my son alone, or are there other kids like him.... not quite neatly fitting on the spectrum, but there?

I'll shut up now.

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Old 10-08-2010, 04:53 AM   #2
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Mira11 HB User
Re: Undiagnosed, Not understood

Sadly many parents over the years have come across teachers like the one you have who just cannot see eye to eye and respect the knowledge that the parent has of their own child. It sounds like your son has made wonderful gains but like you say, she cannot see that. And yes, we did have a teacher one year who only saw it his way and was extremly know it all and rigid and I just had to work around him and make my son's home life as enriching as possible and confidence building as possible.

What I would suggest is bringing in an outside source psychologist to do this evaluation and then have he/she work with the teacher. That way you step aside and the situation isn't as difficult. The psych will do a full history and this is when you will tell them all that you have explained and ask the psych to work with the teacher for the best behavior and academic plan for your son as possible.

Good luck. Keep us posted.

Old 10-09-2010, 11:15 AM   #3
Join Date: Oct 2010
Location: Florida
Posts: 2
inkmuse HB User
Re: Undiagnosed, Not understood

Thank you, Mira.

He had another Psychologist appt yesterday. She doesn't agree with the teacher's assessment of Opposition Defiant Disorder. She says she doesn't see that at all. She said she would think ADHD except that his triggers aren't ADHD related, and he has a lot of behaviors that have nothing to do with ADHD, so she believes he is on the spectrum, even though he is affectionate with me. He does okay alone and one on one with adults, but not in large groups or with children. She said his eye contact still isn't typical and more of a learned behavior. (He makes a point to glance at you before talking, but doesn't hold eye contact. She said it's hard to tell where he is at now because he's been in early intervention and on the diet. The good news is that they have more than just my word to go on. He was in a program from 15months-3years, so there are professionals with documentation of his old behaviors as well (behaviors we still see, just on a much much smaller scale than when he is off his diet)

My son says he has friends at school, but seems to confuse "friends" with classmates she thinks, because he says he doesn't play with any of them and would rather play alone. She asked who is best friend was and he said "Just my mom"

The first 2 days on the medication has been good so far. It helps him stay focused, though he still struggles--but he's also easier to bring back down when he flips out. I have noticed more stimming behavior though today. He's back into the spinning, lining, stacking things, an weird repetitive hand movements. His eye contact also seems worse today, but then I'm wondering if that's not just in my head because the dr pointed out that he doesn't hold it very well. Maybe I was just used to it.

The real struggle I think will just be with the school, who is really set on thinking that because they once had a kid with autism, they know exactly what autism looks like and that can't possibly be what my son has. I don't think an army of doctors would be able to convince them otherwise.

Old 10-10-2010, 01:33 PM   #4
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Re: Undiagnosed, Not understood

Hi ,
Once your child recieves an official diagnoses things will become a lot easier. Because then he will qualify for services under the ADA act. It will not matter what the opinions of the school teachers would be. They are not in the position to diagnose. Just because there was once a child with autism in the school does not mean anything. Because kids with autism can vary in behaviors and not look totally the same. That is why it is called a spectrum disorder.
my son was diagnosed at the age of 3 1/5 and was placed in a special school program. His teacher did the same thing to me, even though professionals had given him a diagnoses. He spent all his years in special ED programs, and at different ages the diagnoses varied between high functioning autism to Asperger's. Then at age 16 he was evaulated by a neuro psychologist through our local regional center , and was given a diagnoses of autism . He is verbal , but did not talk in complete sentences until age 5. when very young was very hyperactive too. We all knew he was somewhere on the autistic spectrum and always had the services. He is now 17 years old . Even though the diagnoses varied it was always on the spectrum .
My point is that is will become easier once their is an official diagnoses.

Old 10-20-2010, 09:29 AM   #5
Join Date: May 2007
Location: UK
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DannysMum HB User
Re: Undiagnosed, Not understood

I'm appalled by such back ward educational practices - a teacher should try and teach through modelling- fancy modelling that it is ok to break someone elses things!! It's never right to do that what ever the child may, or may not be, diagnosed of. It makes me sooo sad to think of your little fellow having to watch such cruelty. It sounds like she was 'getting her own back' .Well she should jolly well grow up and learn to teach properly - ALL children, not just your easy neuro typical ones. ARRRGGGHHH!
Anyway, back to us My little chap is very affectionate - he tries to kiss goodbye to all adults, and gives me lovely hugs. He can sort of communicate with adults as they do it on his terms...but not really with children. And he's as autistic as they come. So...throw Rainman out of the window - they are all SO different. Big deal that the school has had an autistic child before, they obviously have no idea what autism is. Ignorance again...and in an institution that should be fighting against ignorance and accepting children whoever they are.
Good luck to you - hope you get the diagnosis soon and possibly a better place for you son.
And my little boy refers to other children as 'friends' - he's learnt the word of his teachers, but they aren't friends in the way we mean it. They interact, or not, in their own way.

Last edited by DannysMum; 10-20-2010 at 09:31 AM.

Old 10-26-2010, 12:33 AM   #6
Join Date: May 2007
Location: Dallas,GA,USa
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UndiagnosedMom HB User
Re: Undiagnosed, Not understood

To make a VERY long story short...I know how you feel.
I'm having the same problem at school with my undiagnosed son who is in 5th grade. I started putting the pieces together at the beginning of last school year that he is probably on the ASD spectrum- high functioning, Aspergers, or PPDNOS.
He's been struggling socially, and with behavior and grades all along, but this year is AWFUL.
His teachers have pretty much have written him off as a behavior problem, bully, manipulator, lazy, and probably a few other things. They seem to be looking for him to mess up instead of taking my suggestions on how to encourage him and head off overwhelming situations that cause certain behaviors. They are starting to treat me like he is not disciplined at home and I am just making excuses for him.
I hope once we do get him diagnosed it will stop all the nonsense with the teachers.

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