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Am I alone?? (Autism/PDD question)

My son has developmental delays. We have started the process to get a diagnosis but everything I am reading points to pdd. I have put off this step for over a year because I hoped he would simply 'grow out of' his difficulties and I fear him getting some fad diagnosis that will haunt him forever if it is incorrect. He's only 3. His behavior isn't horrible but he just seems to not even hear or connect with the rules I give him. He does the weirdest things (puts things in air vents, has massive melt downs over seemingly inconsequential things, is almost a year behind in his speech, pulls me around the house by my arm, becomes fixated on watching the same videos over and over, really becomes fixated on any routine even how he would like a diaper change) I'm tired of feeling like a failure as a mother. Everyone's approach is that if I did something different, he might respond better... I have so many mixed feelings :(

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Anonymous

Asked by Anonymous at 12:02 PM on Feb. 16, 2010 in Preschoolers (3-4)

Answers (9)
  • I have a son whose almost 17 and has high functioning autism. I wouldnt worry about any label they might put on him. They put off (the schools/professionals) labeling him with autism until they were certain. From Kindergarten til 4th grade I had nothing but issues with his outbursts and behavior problems, not to mention his falling behind. In 4th grade they *labeled* him and he got behavior therapy, medication to help with outbursts and by the end of middle school no one could even tell he was autistic. Id try and get as much help as possible if its available. Deal with it now, not later.
    gemgem

    Answer by gemgem at 12:12 PM on Feb. 16, 2010

  • no you arent alone... if your research points you to ppd. why would you think that was a fad diagnosis.... i have aspies and my generation was wildly underdiagnosed... mostly because they didnt know so much about it. if i were a kid now i would be recognized and HELPED.... so try to think about therapy like that. it will really help him in the long run. you dont have to tell the 3 yr old he has been diagnosed with anything. some of what you have described is typical 3 yr old behavior. the same videos all the time is normal. that age group is very fixed on routines. they provide safety and predictability in a world they have little control over. there are a lot of groups for moms with kids on the spectrum that could support you as well. best of luck!
    AmaliaD

    Answer by AmaliaD at 12:12 PM on Feb. 16, 2010

  • I know much is under diagnosed. But I myself was improperly diagnosed with ADD. If anything that is why I have been as proactive about this as I have been up until now. I have been hesitant also because of my spouse who is supportive but I think very nervous about the idea of there being hurtles for his lil guy to overcome. I KNOW much of it is typical 3 yo behavior and that is why I feel so mixed. Am I right to pursue now? Or should I wait longer for him to mature? What if I wait and he doesn't? Everything I have read says the sooner you start behavioral therapy, the better. I refuse to put his young, developing brain on medications which have no long long term studies for side effects. But the therapy part of it I am all for. So far we have been using a sensory diet with massive improvement. Still, the outburst are not normal. I know he isn't even remotely in control...

    Anonymous

    Answer by Anonymous at 12:20 PM on Feb. 16, 2010

  • I was alot like you I avoided the regular pediatrician that would likely label my child but my experiences have been much like gem gem, at 3 my son was tested and they wanted to wait till he was older to give an official dx but we began some therapy, i did alot of research and learned how to work with him at home. We didnt get a the official DX till 4th grade which then set in motion even more therapy and by 5th grade i had finaly consented to medication to help with his sensory issues. He is now in middle school and unless you pay very close attention you just think he has a few interesting tendancies. I as his mom can see everything that is his autism. He has learned coping skills and has also learned how to manage himself. Routine is critical to his sanity. your not alone and dont ever feel liek a failure or a bad mom, it is a learning process and it takes time. I have been at this for 10 years and i still am not perfect.
    3_ring_circus_

    Answer by 3_ring_circus_ at 2:07 PM on Feb. 16, 2010

  • I agree with you about medications, i was completely against it for a very long time, i wanted my son to learn skills to cope with out meds. As he got older it become very obvious that his sensory disorder was ruling his life and we had to do something. He now takes a low dose of prozac that helps to take the edge off the extreme senses. My son tell s me with out it he feels out of control it is hard for him to concentrate becuase he is always sidetracked by temp. or sounds or smells. He made the choice to start meds when he was 10, we made him a part of the decision and he asked if he could try it and his doctor agreed to give it 6 weeks then see how he felt, after 6 weeks he was a different kid and he asked to stay on the meds.

    At this point I would say dont put your child on the meds until they can fully communicate with you about the affects the meds are having. Of course there are times when that is not an option.
    3_ring_circus_

    Answer by 3_ring_circus_ at 2:12 PM on Feb. 16, 2010

  • My nephew (who's now 14) was diagnosed with PDD around 3 1/2. It took a long time for them to accept that there was something wrong and get an accurate diagnosis. While I can totally appreciate the concern about labels (my son has developmental delays), the sooner you can get a diagnosis, the better off he'll be. Early therapy has better outcomes. No one knows for sure what causes autism (if that is in fact the problem) but what they do know is that it has nothing to do with what the mother does. You absolutely aren't a failure. What you do need to do is what you believe will be best for your child. Push to get an accurate assessment of your child's behaviors/delays then push equally hard to get appropriate help. That's what your child needs most from you. Good luck!
    Anonymous

    Answer by Anonymous at 3:02 PM on Feb. 16, 2010

  • You are absolutely not to blame for him possibly having the diagnosis. You are, however, negligible for putting this off for a year. Statistics PROVE that early intervention decreases long term effects. Waiting is only hurting your child.
    Anonymous

    Answer by Anonymous at 5:07 PM on Feb. 16, 2010

  • OP here- I think it's incredibly off base to say I am wrong for having waited. MANY children have delays and go on to meet or even exceed their peers. Also, he is my first child meaning I had nothing to compare him to as far as 'norm' for his age. All children develop at their own paces and even milestone markers aren't always clear red flags. I have no regret over waiting. All I do have regret over is having ever judged others parenting in the past and been enough of a push over to let people like you make me think your opinion was some how valuable. It's not. I advocate very well for my kids. It's unwise and self righteous to assume other wise based on such little information as is here. I know EI helps and the earlier the better. HE'S THREE. I see people on here just waiting until their child is in Kindergarten to get a diagnosis. When someone is going through this, finger pointing is really tacky
    Anonymous

    Answer by Anonymous at 7:36 PM on Feb. 16, 2010

  • Your description of your son sounds so much like my son when he was 2-3. I can't tell you how many toys we lost down the air vents in his room! I now look back on those days and smile, but I remember how terrible it was at the time. It will get better!! You will get your diagnosis, most likely he will start a special preschool (my son went to a full day preK from 9:15-3:15), speech therapy, etc. Even with the diagnosis, there are a myriad of therapies that you will have to pick and choose from as far as what works for your family. Take it one day at a time - it's good that you are catching this early (and 3 IS early).
    My son is 12 now and although a far cry from typical, he has a great sense of humor and is able to follow rules. He still like routine and consistency, but we've learned to deal with that, and he's learning to slowly deal with some change. It gets better!
    missanc

    Answer by missanc at 8:53 AM on Feb. 17, 2010

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