mild autism

[wendysculy]

My daughter was diagnosed with autism spectrum disorder on Tuesday.  She was also diagnosed with an expressive speech disorder, speech apaxia and a sensory disorder.  My husband and I have accepted these diagnoses, but we are struggling with other people questioning us as to why we think Zelda is Autistic.  First sorry this is not really a question but  I am just frustrated. How do I deal with these people? I don't want to be mean or push them away. some of them I work with and some are in my family. You would think that famly would be supportive.  Well my side is very supportive, my husbands it not.  First of all, I did not diagnosis her.  A team of professionals did, a neurologist, a psycologist, a ot and a speech therapist. and then someone had the nerve to say that she is not autistic her problem is that she is not stimulated enough.  What?!  She said that we work so much we don't have enough time or are to tired for her.  AHHH!  All i do when I am home is work and play with my kids.  I don't even clean anything untli they go to bed.  I am so angry!  Really these people are supposed to be family.  So my husband and i both have to work.  Well we are not rich, we barley make it by on what we do make. someone actually said it would be better if she was in day care! REally!? I work during the day and my husband at night.  We can't afford day care! and my kids are always home with us.  We work with them all the time.  I know I can't go off on these people, but I needed to get this out.  Another thing, just becasue my daughter doesn't act like the autistic people you know does not mean she isn't on the spectrum.  AHHHH why do I have to defend a doctors diagnosis. its like saying you have a sinsus infection and then having someone tell you well you are not as sick as I am so its not an infection.  People are so dumb.  There is so much research out there about autism, maybe they should read it before opening there big fat mouth. Really to say all of this to a mom who just found out that there kids is autistic.   and they are family. AHHHH

[wendysculy]

Thank you all.  Since being diagnosed Zelda's speech has improved and since starting some of our own sensory work with her, her inapporioate behaviors have gone down. Thank you all. I may have to order those autism cards.

[dljames]

What has helped me was to hand out cards that explain what autism is. You can order them from Autism Society. What these people need is education. That really helps. I was very defensive at first too until I realized I can use this as a way to educate people. Good luck! My heart goes out to you.

[specialmom]

Hi,  my son was diagnosed with sensory integration disorder when he was 4.  We started the process when he was 3.  During that period, I too was very frustrated.  I had a woman I am close with, my husband's cousin, actually argue with me about it.  I had another just go at me very matter of factly but in a way that was offputting.  Well, I at that time just decided that I wouldn't have heart to hearts about this difficult subject wtih either of these two ladies.  One of them----  I've not had a conversation since and my son is now 8 years old!!  

What you really need is a warm hug and someone to tell you it will be okay.  Your daughter is still the precious little one that you've always loved and she always will be.  A diagnosis doesn't define who she is and who she'll become.  A diagnosis is the thing that gives you a direction to go in to help her.  And help her, you can!  Early intervention is AMAZING.  They can do such wonderful things for our children these days and you will be amazed at the progress she makes.  I promise you.  There will be times that you have a set back or a struggle but overall, she IS going to progress.  

We are going to have a sensory forum soon here at med help.  I'll send you a note when we get it going.  

By the way, as I said, my boy is now 8 and is really doing well.  He's overcome a lot through intervention.  We're still doing OT (which kids LOVE) and work on his sensory issues and work to keep him regulated, but he is functioning very well.  Have hope dear.  Things are going to be okay.  peace

[wendysculy]

I am just tempted to tell them that if they don't want to support Zelda (my daughter) then they have no business being in her life.  I have to push everyone who is not supporting us away. Its not like I made this up, doctors evaluated her.  I am not sure where you live but I live in NJ and we went to Children's specilazed hospital.  I have been told that they are the best for autism and CHOP is the best for everything else.  thank you. its comforting to know that I am not alone

[Evie1029]

Yes, I definitely get where you are coming from.  I'm in the process of getting my 18 month old evaluated for autism and like you, my side  of the family has been great but my husband's side, not so much.  My MIL also thought having my daughter in daycare would solve her so-called problems.  She also tried hard to convince my husband that this was all in our heads.  My husband shut her up by asking if she had ever been around an autistic kid.  She never had and for these people you mention that do know a kid on the spectrum, they must not know that all kids are affected differently.  I think most people also assume that autistic kids can't speak.  

As for putting your daughter in daycare I'd think that'd be a bad idea even if it was an option for you.  With her sensory and speech issues I'm sure it'd just make her frustrated and upset.  With my daughter, she shuts down around other kids, their noise and activity is just too much for her.  You know your daughter best, these other people do not.  I guess just do your best to not let it bother you.  Easier said than done I know, but maybe just continuing to reach out to other families affected by autism will help.  Take care, and if you come up with any good come back lines let me know!