Consistency - New to this | Autism PDD
Hi-
I am new to this and not sure if my son has autism./ PDD NOS or anything. I have had him evaluated several times by a speech therapist when he was 18 months, again at 2 and a developmental pediatrician when he was almost 3 and again by an OT when he was 3. He is now almost 3.5 and they continue to tell me that he does not meet the criteria.
My question is; Specifically my son seems to have days where he acts like any other 3.5 yr. old boy. He plays with toys, plays pretend, plays with other kids. (to some extent, I think he is behind socially, he will play chase and hide and seek things like that with other kids). He does not interact at all with kids he does not know.
Anyway, can a child be autistic and have such drastic behavioral differences from one day to the next. I feel like a complete psycho. Just when I am convinced that he is autistic. The next week he acts unbelievably different. Is it possible?
Or do other mothers of autistic children see the extreme behavior differences that I am seeing????
Any thoughts will be appreciated. I am desperate for some answers.
Hi-
Thanks for your reply. He is in OT 1X per week and they said he just has sensory issues because he has had alot of ear infections and sinus infections. They said that he does not have any other issues???? Now they are saying they are not sure if he needs OT. He loves going to OT and plays very well. He can cut with sissors and his fine motor skills are great.
He was in speech and the speech pathologist said she can not justify ethically him being there?
However, at home he sometimes acts like he is out of it. He does not respond to questions, ignores people and wonders around aimlessly. On these same days he seems to have no interest in any of his toys and climbs excessively. He also plays the drums pretending. And makes a grunting noise to the song? Is that stimming? I don't know. Sometimes he will flap his hands if excited. The developmental ped. told me that some kids that are not autistic will also do some stimming?
Other days he will answer why questions or anything you want and respond to anything you ask him? Could this be just his personality or do people see this type of difference? He also plays different on these days/
I feel so crazy? Is there possibly something else going on?
My mother says he acts like that because I have been so interactive and over stimulate him since he has been born? Which I think I have but I am not sure that is why he would act so different.
Yes, the OT was the only person that pointed to sensory issues. Other than that, no one else thought that their was a problem. I do need to say, that when he is not feeling well, ear infections, sinus ect. He has never had a fever but really acts different.
Do your twins act different some days. Or "normal some days" and not others?
I'd say it's great that the pros that are seeing him are so positive about his progress, some kids have autistic traits but are not on the spectrum. It took my son several meetings with dev doc and dev prof over 2.5 years to get diagnosed as pdd-nos. I never laid off the intervention during that time tho. He's still on the spectrum tho. You do need to get as much done as you can no matter how 'mild' the symtpons appear.
On the other hand since you are posting on a board of autie parents our answers will be a bit biased. Perhaps you should go back to the dev doc with an open mind. Perhaps he has glue ear? I understand that often looks like pdd. Keep looking for answers tho. Make sure he gets what he needs. You know best.
Glue ear that is interesting. Can they have that with ear tubes? How can it be detected? I would love to find that as the reason for his drastic behavior changes?
I am sorry to continue saying the same thing. But no one has really answered whether or not a child on the spectrum can act normal one day and have autistic tendencies the next? Does anyone know if that happens or are most children that are autistic pretty consistent with their behaviors? I understand like anyone they can have good days and bad days. But can their skills actually be so different from one day to the next?
[QUOTE=dtbj] I have had him evaluated several times by a speech therapist when he was 18 months, again at 2 and a developmental pediatrician when he was almost 3 and again by an OT when he was 3. He is now almost 3.5 and they continue to tell me that he does not meet the criteria. However, I see typical signs all the time. Even though he is very verbal.[/QUOTE]
So far, it sounds like you have had only one doctor take a look at him when he was almost 3, but that's it for medical professionals - the only ones who can officially diagnose your son.
In my experience, unless they regularly work with autistic kids, therapists tend to downplay the autistic traits because they don't want to wig the parent out. Or are just uninformed.
I heard umpteen of them scoff: "but Cole is soooo affectionate!" As if you cannot be autistic and sweet simultaneously! Duh. Of course you can, but many of these therapists know as much about autism as regular viewers of The Movie Of The Week. They think of severe autism, not Aspergers or PDD NOS.
Its really hard to diagnose a child that young, so he may be indeed on the spectrum but on the milder end. As another poster indicated, even if a person has just Aspergers Syndrome, he or she DOES benefit from early intervention.
Children with Aspergers don't usually have the speech problems seen with other forms of autism, so I can see the speech person's point in a way. You are not worried about speech, you are worried about COMMUNICATION. I think for this type issue, you need a special education plan...where they can use goals like the number of times he uses appropriate social greetings with peers, the number of rounds of conversation he can carry while staying on topic, etc.
At age 3.5, your son can be evaluated by the school system for free. But, you get what you pay for. Consider taking him to a developmental pediatrician or perhaps a child psychologist that specialize in the autistic spectrum. If he is diagnosed as PDD NOS or Aspie, then you can take the diagnosis to the school system to set up special education, OT, Speech.
Of these three, though, I think special education is the most key. It focuses on how the kid speaks and how the kid uses his fine motor skills...not just whether he can use them period.
Hope this helps! Good for you for staying on top of this stuff!
NOT YOUR FAULT.
Whatever else is going on ... NOT your fault!!!
I know sometimes I feel like my daughter's isseus are so mild, other times I think she is going to need all the help she can get!
Yes a kid can have "just" sensory issues. But ... symptoms can definitely present situationally too. Or just vary over time.
Thanks for the reply-
This is so helpful to me. I think that it is important to look at the communication not the speech.
Again, he is very good at communicating some days and even with peers he knows. He will say what he wants to play ect. Then there are the days when he is with a couple of peers and they are playing and he wonders around the room.
I do have an appointment with a developmental pediatrician for a follow up eval. I am so scared that if I don't do something now I will miss the opportunity. I have tried to get some support services since he was 18 months old and no body would help me. THey all told me that I was crazy and needed to get some counseling. But I can't help noticing this stuff.
Is it possible for spectrum kids to act like every other child one day and exhibit autistic behaviors another day?
Well I just wanted to add that my boys were evaluated by several people also, a dev pedi at age 2, early intervention (a PhD in child development) shortly after, a speech therapist and OT, the same dev pedi at age 2.5 and again at age 3, a neuro at age 3, and the only ones who thought they had autism characteristics were the ST and OT. All the others and especially the dev pedi told me absolutely no to autism. At age 4 they saw a different dev pedi in another state and a child psych and they told me absolutely yes to autism, although I am not sure how convinced I am since the psych spent 5 minutes with them and the dev pedi pretty much made his mind up talking to me on the phone setting up the appt. I do have the diagnosis though and it has opened up doors at school and with the insurance company and the therapies have really increased. I do plan on going to another dev pedi ( a different one this time with an 8 month waiting list but highly recommneded and thought of). I am also thinking of taking them to another neuro for another opinion. I am having a hard time thinking that there really isn't anything wrong if autism is a neurological disorder. For me the drs have not agreed with each other and it has been really frustrating cause I feel like I still don't know the truth. I suspect that they are twins and they have a tendency to roll them into one person and that most likely one is and one isn't is the reason I am having such difficulty. They are also missing some of the typical characteristics, they are both pretty social. I guess I'm saying that even though drs tell you no if you feel something is still wrong don't dismiss the possibility of autism. Maybe look for another opinion or a different dr.dtbj, google "Semantics and Pragmatics" and you will have TONS to give your speech therapist!
TOTALLY possible!
you've seen one kid with autism you've seen one kid with autism. I'd say write down all your concerns, even take some video footage of him being 'out' and let a dev doc have a good look. If he draws a blank just keep monitoring the situation closely til you are satisfied with his development.
I would bet a lot of money that you are not imagining things. Studies show that a mother's instinct is generally right on. My son has autism--he has it about 4 days per week. On the other days, no one would ever know (of course he has it all the time, but there is extreme variation from day to day). You are not crazy and your child is not acting like that because of something that you did. Keep searching. You will eventually find someone in tune enough to grasp what is going on. I found that the people who knew best were the teachers. They see a lot of children and they know better than docs how children behave and whether something is odd. It took me 2 years before I got a proper diagnosis for my son. In the intervening years, I heard all kinds of nonsense from people about why he was acting the way he did. Trust your gut. Keep searching.Nowwhat
My son definitely varies and he does have it some days and not others. Today he definitely had it coming off the bus and then within an hour it had mostly disappeared. Reappeared somewhat at dinner and again at bedtime. I'm not trying to be glib - but we do have instances where he seems totally fine and others where his autism shines through like a spotlight.
You definitely need other opinions. Therapists do definitely downplay things (some do at least). Trust your instincts.
I guess I would be interested in knowing what red flags you see. You mentioned some - but have you taken the www.childbrain.com PDD questionnaire? That might be helpful in organizing your thoughts and seeing where he comes out.
I think the fact that his fine motor skills have improved so much is great! I wish I could say the same for ds. We have never had speech (except group speech in ECSE - which was more him being a role model for the other kids than anything) but I think it's great he's made so much progress!
By the way, my ds acts much more autistic when he is getting sick. About three to four days before he gets sick, he starts perseverating and just acting all cranky and is much more irritable. This also occurs about 3-4 days before the start of my period. I have tracked this for over a year - it is real and others on the board have noticed this somewhat as well (I posted on this back in August twice about it - search for PMS). He knows when I am going to get my period DAYS before I do! But I clue in because now I have seen the cycle with his behavior.
We have had days of NT-like behavior. But since school has started - that has pretty much gone out the window. We have snippets of time that are NT-like (a few this afternoon) but he is really stressed with all-day kindergarten. We are working on this and the ASD teacher is SO on top of it by working breaks into his day and allowing him to finish his lunch in the resource room while his class is having rest time (he HATES rest time because he says it is impossible for him to be totally quiet for 20 minutes!)... Anyway, I would trust your gut. We didn't even suspect (although we should have - we were first-time parents though!) until he was 3 1/2. We knew he marched to a different drummer, but he was so verbal and so bright that we just thought he was a little quirky. We got a diagnosis shortly after he turned 4, thanks to a very good pre-school teacher.
Good luck on this! Keep us posted!
My son is always on the spectrum, but he has good days and bad.I haven't read all the posts, but wanted to reply to the original question. I think the BEST thing you can do for your child is to forget about the specific medical diagnosis and move on to getting a full, multidisciplinary evaluation through your local school district. Now that he is over age 3, he qualfies for the eval. Even if he eventually gets a medical diagnosis of some ASD, there is nothing the medical community can do to help, really. But there is a TON the educational community can do to help and that help does not depend on getting a medical diagnosis of any kind. It depends on whether or not your son tests in the deficient area in any of the develpmental domains (communication, PT, OT, speech, social, behavioral, functional, etc.)
Today, put in writing to your local school district's Director of Special Education that you would like your son evaluated for possible special education and that they should consider this letter your written consent. This is important becaus necessary services MUST BE IN PLACE by the 60th day from the date of the letter. Of course, it's possible your son won't be found eligible. If that happens, post about it and you'll get plenty of further recommendations.
My son's behavior doesn't vary so much by day as it does by environment. He seems more "normal" at home than he seems in a crowded, noisy and social environment.
I think it's important to assume that our children behave REASONABLY. Not necessarily desirably or appropriately, but REASONABLY. There is definitely a reason why your son has such ups and downs from day to day.
My first thought is physical wellness. Is he good about communicating illness/pain? Is he also up and down in how well he sleeps? Sinus problems can create breathing problems at night -- even snoring and sleep apnea (micro-wakings where you wake up for a split second because you've stopped breathing). That can definitely have an affect on waking behavior.
Before your appointment with the developmental pediatrician, do a lot of observing. These checklists should help you know what to observe (some of the questions might not apply for a 3.5 year old), but only a professional can make an accurate diagnosis.
http://www.sensory-processing-disorder.com/sensory-processin g-disorder-checklist.html - for identifying sensory symptoms
http://www.sinetwork.org/aboutspd/questionnaire.html - Sensorimotor History Questionnaire for evaluating preschoolers
Checklists from the book "Parenting your Asperger Child" (Asperger is an autistic disorder without verbal delays):
http://printables.familyeducation.com/forms-and-charts/skill -builder/51750.html - Part 1, Difficulty with Reciprocal Social Interactions
http://printables.familyeducation.com/forms-and-charts/skill -builder/51751.html - Part 2, Impairments in Language Skills
http://printables.familyeducation.com/forms-and-charts/skill -builder/51755.html - Part 3, Sensory Sensitivities
http://printables.familyeducation.com/forms-and-charts/skill -builder/51752.html - Part 4, Narrow range of interests and insistence on set routines
http://printables.familyeducation.com/forms-and-charts/skill -builder/51754.html - Part 5 - Cognitive Issues (including mind-blindness)
Good luck with everything!
[QUOTE=dtbj]Hi-
I am new to this and not sure if my son has autism./ PDD NOS or anything. I have had him evaluated several times by a speech therapist when he was 18 months, again at 2 and a developmental pediatrician when he was almost 3 and again by an OT when he was 3. He is now almost 3.5 and they continue to tell me that he does not meet the criteria. 
However, I see typical signs all the time. Even though he is very verbal.
My question is; Specifically my son seems to have days where he acts like any other 3.5 yr. old boy. He plays with toys, plays pretend, plays with other kids. (to some extent, I think he is behind socially, he will play chase and hide and seek things like that with other kids). He does not interact at all with kids he does not know.
Anyway, can a child be autistic and have such drastic behavioral differences from one day to the next. I feel like a complete psycho. Just when I am convinced that he is autistic. The next week he acts unbelievably different. Is it possible?Or do other mothers of autistic children see the extreme behavior differences that I am seeing????Any thoughts will be appreciated. I am desperate for some answers.
[/QUOTE]Tuesday, from the moment I picked her up a daycare she was barely speaking and grunting everything. All night long she was so hyper, would not sit still for one second. I had to chase her down to change her diaper. She was mean to her baby brother all night took everything away from him and was throwing everything.
Last night, was a great night. We broke 3 of her ritual routines that she usually does everynight. She sat for about 10 maybe even 15 minutes and let me read her a book. She brushed her teeth and did not fight me to change her diaper. She was even singing part of the song "Hey there Delialah" on the phone to her Mom Mom (grandmother). It was a nice night.
But who knows what challenges tonight will bring, but I am still proud of her.
Mommy to Abby Grace 3yrs old PDD/NOS
Hi-
Thank you everyone for the great responses. I really appreciate it. The links are great....
Just curious about something else. Someone mentioned that kids can have autistic tendencies and not be autistic. What does that mean? How is that
Does it imply that they are so mild that they do not meet criteria? Or do they just do some things that maybe autistic kids do?
Thanks again for all your comments they are so helpful and it is so nice to be able to communicate with people that have a clue...
Ditto to all that responded to you...and welcome:) My J with AS treats everyone about the same. Except for me and sometimes her brother.My J had sensory issues bad ones, still has them. SID
rep. speech, echoing
flapping,spinning, finger walking, toe walking
hyper, acted deaf,
still does not play with her toys, J has gotten better.
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