Anyone want to talk about Asperger's/Autism

[mousescrapper]

just want to send out a big HUG to the OP and the other Mom's and Dad's and siblings who care/live each day for/with children on the spectrum...

OP I yes ditto the disABILITIES threads here and say seek out the help you can now thru EI in your state if you still can. You are Mom and yes you know best...I am sorry your DH is not seeing or supportive. Please hang in there...

I have learned thru tears, joys and mistakes you need to be a team to deal and work thru many of the challanges any child faces but especially if you think they are not developing correctly.

look for some local autism support groups

talk to your Ped or seek out a Developmental Peditrician who specilizes in Autism and Spectrum disorders.

find a doctor you can trust and it doesn't hurt to have your son evaluted.

I have 4 children, 2 on the spectrum and both w/ ADHD. My DS is HFA and my DD is PDD-NOS...my middle daughter has various sensory issues but hopeful she continues to show no signs of autism...my youngest DD sounds much like your little guy...she just aged out of EI and luckily qualified by need to attend a spec ed/need pre-school. She has not been officially daignosed w/ anything other then some severve speech/social development delays.

We are feeling most hopeful she has found the individual needs and help she needs right now. That is the first part

Good Luck to you! and continue to LOVE and Cherish you child no matter what hard things occur

 

[ppony]

I should add that DH is not supportive of my concerns at all. He says that autism/asd doesn't exist (which is such an ignorant thing to say)...he says that they diagnose everyone with it these days and he doesn't want his son labeled....so I guess I'm in this by myself becaues he won't even discuss the issue with me.

While my DH doesn't deny the existence of the disorder, he keeps finding everything he can to not "label" his DS as well. If he would actually READ about it, he'd maybe be more willing to see the issues. We actually had an early intervention team come here (thank HEAVEN for that program) and do their evaluations over a period of a few weeks and now have a teacher coming weekly to help us work w/ him as well as an OT/PT. My DH has to leave the house when they are here or he gets MAD. It doesn't make sense to me to get angry, they are only trying to help and figure out what will and will not work for him but oh well.
I just wanted to pipe up and add a hug and tell you I'm there with you. My son is just barely 2 and I've only just begun to realize what is going on. Until 6 month ago, I didn't know what autism was. I still don't know much but am trying to self-educate. Iv'e got LOTS of reading to do on this board. THANKS to the DISers that tipped me off to coming to this forum.

HUGS!

 

[jodifla]

While my DH doesn't deny the existence of the disorder, he keeps finding everything he can to not "label" his DS as well. If he would actually READ about it, he'd maybe be more willing to see the issues. We actually had an early intervention team come here (thank HEAVEN for that program) and do their evaluations over a period of a few weeks and now have a teacher coming weekly to help us work w/ him as well as an OT/PT. My DH has to leave the house when they are here or he gets MAD. It doesn't make sense to me to get angry, they are only trying to help and figure out what will and will not work for him but oh well.
I just wanted to pipe up and add a hug and tell you I'm there with you. My son is just barely 2 and I've only just begun to realize what is going on. Until 6 month ago, I didn't know what autism was. I still don't know much but am trying to self-educate. Iv'e got LOTS of reading to do on this board. THANKS to the DISers that tipped me off to coming to this forum.

HUGS!

Your son is pretty young to be labeled with autism, actually. NIH studies have shown the earlier a child is labeled with autism, the less likely the label is to be correct. I want to say in one study, the label was wrong 60 percent of the time when they studied those under 2 years old.

But it's certainly not too young to work on various issues a child might have, as long as the therapy is child-friendly.

 

[ppony]

Your son is pretty young to be labeled with autism, actually. NIH studies have shown the earlier a child is labeled with autism, the less likely the label is to be correct. I want to say in one study, the label was wrong 60 percent of the time when they studied those under 2 years old.

But it's certainly not too young to work on various issues a child might have, as long as the therapy is child-friendly.

And he technically hasn't been yet, BUT the next standard Dr. visit isn't until 3 and we all know that is too long to wait if we are seeing very serious issues now. The team that cme to evaluate him and to work with him were very kinds but honest. We are working on some serious delays and social issues. I'd be MORE than happy for him not to have that "label" but I'm also seeing what is right before me.

 

[lucigo]

Your son is pretty young to be labeled with autism, actually. NIH studies have shown the earlier a child is labeled with autism, the less likely the label is to be correct. I want to say in one study, the label was wrong 60 percent of the time when they studied those under 2 years old.

But it's certainly not too young to work on various issues a child might have, as long as the therapy is child-friendly.

When you know, you know. I knew at 8 months that my son had a problem, looking through me, laying in the floor watching car wheels. At 18 months he started therapy and at 24 months he was formally diagnosed. The good news is at 6 he is begging me to play wii with him so gonna cut this short LOL

 

[ppony]

When you know, you know. I knew at 8 months that my son had a problem, looking through me, laying in the floor watching car wheels. At 18 months he started therapy and at 24 months he was formally diagnosed. The good news is at 6 he is begging me to play wii with him so gonna cut this short LOL

THANKS! So true.
I have to hug, laugh and smile at this. That's one of his BIG things. Spinning wheels. Spin spin spin. Since he was little, he loved Wheel of Fortune. It was the wheel he loved the most. Now he spins everything he can get his little hands on.
I'll be redecorating his room to the "Cars" theme this winter. Sadly, the wheels on his little bed don't spin (and don't think he didn't try ), but I'll be painting a few of the cars on the wall and we'll fix some wooden wheels to the wall in a way he can spin them. DH's idea. I'M the arist and he beat me to te cool idea.

 

[lucigo]

THANKS! So true.
I have to hug, laugh and smile at this. That's one of his BIG things. Spinning wheels. Spin spin spin. Since he was little, he loved Wheel of Fortune. It was the wheel he loved the most. Now he spins everything he can get his little hands on.
I'll be redecorating his room to the "Cars" theme this winter. Sadly, the wheels on his little bed don't spin (and don't think he didn't try ), but I'll be painting a few of the cars on the wall and we'll fix some wooden wheels to the wall in a way he can spin them. DH's idea. I'M the arist and he beat me to te cool idea.

If you aren't familiary with floortime please google it, you are doing a great job! Don't worry about extinguising the behavior, work with it! It works! The next obescession for my son after wheels was numbers and then letters. He is the biggest Pop Century fan there is...because he can go sit in the numbers and read all of the larger than life words...and thats SO much more fun than going to Magic Kingdom!

 

[ppony]

If you aren't familiary with floortime please google it, you are doing a great job! Don't worry about extinguising the behavior, work with it! It works! The next obescession for my son after wheels was numbers and then letters. He is the biggest Pop Century fan there is...because he can go sit in the numbers and read all of the larger than life words...and thats SO much more fun than going to Magic Kingdom!

THANK YOU!!! I didn't know about it. I found a website on it now and I have lots fo reading to do.

 

[merryweather's twin]

I have a Son who is now 14 and has autism.You could not tell now unless I told you except for his current obsession (Star Wars)and not being ready for girlfriends.
First I want to say you are doing everything right! Speech and Occ. therapy as early and as quick as possible will help him more than you know. As for your husband mine was the same. I think this is hard for men. It was hard on our marriage the first year but it made us all stronger. I would talk to your childs Dr. and the local school system. At 3 yo there is special pre school that is free and will help with all kinds of social skills and they will test him for speech and give him free therapy to help get him ready for school.

Be careful in getting official diagnosis this early if your current insurance is paying for therapy. We have Atena and they do not cover Autism or PDD (they call it a mental illness not a disability)!!!! We had to pay for all the different Dr.s (13 for diagnoisis alone) and all the help(speech and other therepy) he needed out of pocket! They paid for 20 appointments in 11 years! So check your insurance. We also found help at the Speech and Hearing clinic at our university. They have grad students give speech under supervision for super cheep or free.

When he was 3yo He could not speek 5 words...He was in his own world...he had over 23 different Dr.s and teachers-therapist. And 2 pre schools. It was crazy and hard... but now he is on the honor roll and is just a normal 14 yo guy who does well in school fits in with family and friends and has a bright furture.

Most of all hang in there It will get better... There is hope.

 

[estherhead]

I should add that DH is not supportive of my concerns at all. He says that autism/asd doesn't exist (which is such an ignorant thing to say)...he says that they diagnose everyone with it these days and he doesn't want his son labeled....so I guess I'm in this by myself becaues he won't even discuss the issue with me.

I have a nephew with Asperger's and my own 2.5 yr old who is quirky. She's not Asperger's but in ST and early intervention.

Anyway, you already got great advice so I won't repeat. I'll just say that dh's often aren't on board at the beginning. Don't know why, but I know both my b-i-l and my dh drag their feet with "labels" and not want to have them tested, etc. But when they see results things are different. Dh was the first one to appreciate that after months of ST our 2 yr old was finally able to say "Dad." He was more than OK with ST after that and even helped and read the papers/books.

So here's my dh advice. Follow your motherly intuition and get books from the library but don't try to squeeze him into a mold simply to get a label. Do any program that your son qualifies for because OT and ST can't hurt, they'll only help. When your dh sees how it's helping (even if it takes years) and how nice it is when you are in public and your son is having a fit or standing on his head in his chair or whatever to be able to say, "He has Asperger's" or whatever it turns out to be.

Autism/Aspergers is not who the kid is. It is what they have. Not a one word definition of all that they are. It's like a kid who's in a wheelchair. You don't ignore the fact he can't walk and not get help because you don't want him to be labelled. You get the help and you deal with other people only seeing him as "disabled." But you never think of him that way. You think of him as him. And yes, Asperger's is the "disorder" in vogue right now. It's irritating that that is the case because it makes people dismiss it. But it doesn't make it not exist. And the reason to get a diagnosis is to get proper tools. No need to try to build your house with a screwdriver when drills are available.

 

[lucigo]

I can't tell you how many times I heard from my DH..."there's nothing wrong with my boy". When he was first born I couldn't put my finger on it but the radar was just off...with my first 3 kids I felt like I knew them. With the 4th I had to get to know him. To make a long story short, my husband now is fully involved in our autism society, volunteers as a teacher and photographer at autism summer camp, and is an awesome dad. He still says....there is nothing wrong with my boy...and that has come to mean autism and all. He is who he is and yes we want him to be all he can be, but we both love him unconditionally.

 

[estherhead]

I can't tell you how many times I heard from my DH..."there's nothing wrong with my boy". When he was first born I couldn't put my finger on it but the radar was just off...with my first 3 kids I felt like I knew them. With the 4th I had to get to know him. To make a long story short, my husband now is fully involved in our autism society, volunteers as a teacher and photographer at autism summer camp, and is an awesome dad. He still says....there is nothing wrong with my boy...and that has come to mean autism and all. He is who he is and yes we want him to be all he can be, but we both love him unconditionally.

You said this so much better than I did. It made me tear up. It's exactly how we feel about our nephew. "There is nothing wrong with him" because we love every single thing about him.

 

[lucigo]

To the parents of the little ones I just wanted to add another thought. There is so much pressure on the parents of a potentially spectrum child that early intervention is critical, and as mothers we sometimes take that pressure ourselves that every second of every day needs to be spent working on this critical time. For me, our son went to speech x2 a week, OT 2x a week, play therapy and music therapy. And when we were home I had him on 20 min intervals with his older siblings and parents. For me play always had a purpose. But for his dad it was always just play with no goals. At the time that stressed me out but I soon realized that he was gaining social skills, eye contact, entering the world of his father, and it was ME who needed to relax.

 

[gandycat]

The two examples that you gave seem sensory in nature. Read through "the out of sync child." Since he's getting OT, talk to them about it. Often kids on the spectrum have sensory problems, but having sensory problems doesn't necessarily mean that the child's on the spectrum.

This was true with my nine year old DS. I have a background in child development and knew that he didn't have PDD or autism but it was hard to find a professional who really knew what to do with him. Thankfully 6 years later, most OT's are skilled in SPD. The best thing to do is to talk to your ped first and then get an eval at a child develpment unit or by an OT. If there are issues, it's so important to get early treatment. Good luck.

 

[Bugsmom73]

I don't have time to read the responses but I would have him evaluated. DS has autism and even if he isn't on the spectrum. It can't hurt. My nephew is also on the spectrum and his dad did not believe he had it and they really drug their feet in both diagnosis and help and my nephew has continued to regress.

My son on the other hand has improved and would probably qualify as PDD/NOS now.

 

[jodifla]

I don't have time to read the responses but I would have him evaluated. DS has autism and even if he isn't on the spectrum. It can't hurt. My nephew is also on the spectrum and his dad did not believe he had it and they really drug their feet in both diagnosis and help and my nephew has continued to regress.

My son on the other hand has improved and would probably qualify as PDD/NOS now.

The problem is, it can hurt. Once a child is given an autism or autism spectrum diagnosis (which doesn't even clinically exist in the DSM-IV), oftentimes parents hurl themselves into expensive treatment after expensive treatment. Most don't work, and there's no science behind them, although anecdotally, people will swear by chelation or hyperbaric chambers or DAN doctors. Parents feel this "deadline" because of the "early intervention is key" mantra so some make some pretty bad decisions.

And ABA is astronomically expensive -- it's also very bad therapy if your child isn't autistic.

With insurance, an autism label can cut both ways, depending on the state. In some, it can get you access to services; in others, not only do you have to pay for everything, it can also label your child with a pre-existing condition.

As a parent, you really have to go in with your eyes open. You have to do your research, and you have to know who is evaluating your child: what their credentials are, how often they are right, etc., etc.)

EI programs and school districts vary widely in their ability to correctly Dx (in some states, they can, in others, you need a doctor's DX). Too often, they are incentivized to Dx with an "educational" autism label because it comes attached with LOTS more money.

As I think I mentioned earlier, I really like Stanley Greenspan's The Special Needs Child. He's certainly an autism expert, and in that book he details how frequently children are being sent to him with an autism DX, when they actually have something different going on.

I think it's important to treat EXACTLY what your child has, not the label du jour.

 

[starnightstarsky2000]

Jenrose66,
I completely understand where you are coming from. I too first noticed that something was "off" with my son when he was 3. He would get upset and start hitting himself in the head and rocking back and forth. I ran and got my MIL (who is a Special Ed Elementary Teacher) and she was like "Ohh he is just upset that's normal" yea i know crazy right? But she was the one with the Doctor in Special Ed not me and she kept telling me he was just fine. So fast forward through him at 3 giving a informal 20 min speech on the scientific difference between hamsters and gerbils including him explaining to the middle age lady who asked that hamsters are nocturnal where gerbils are diurnal. My MIL response to this "Ohh he's gifted" through the 2 years when I couldn't get him into jeans "cause they didn't feel right" and through prek,k,1,and most of 2nd grade where while they could tell he was gifted he was also unsocialized, easily upset over the smallest things and had a real hard time relating to children his own age. Much younger children he was great with much older children/young adults he was great with. Well these all lead to him being a "bad" kid where he had to bring home notes everyday that detailed all the things he did wrong and have to have us sign it and return it. Then came the 2nd semester of 2nd grade when my son's teacher calls me during school to inform me that my son is now writing with his left hand and for the first time in all his year of writing it is readable. So now we are told that he is left handed and all the problems we have had are from him using the wrong hand to write with and that he is ADHD so we take him to a child psy doc who puts him on meds to make "him" fit into the square peg that as a "round" peg he doesn't fit. I was like "My son is perfect the way he is he doesn't need to fit in I just want to help him to learn the best way that he can " but the doc said the meds would help and it was like throwing gas on a raging fire. He had more and more problems and then the school child psy. sat in on his class and we had a meeting that day with his 2nd grade teacher who informed us (at the cost of her job since she isn't a phy) that our son seemed to be displaying the signs of a child with Aspergers Syndrome and we got him tested a month later. The diag. was that he is Asperger's Syndrome with a touch of ADD and the reason the other doc had put him the meds for the ADHA didn't work cause he doesn't have ADHD. When this was discovered the school placed him in the 3rd grade teachers class who had just transfered over from Special Ed a couple of years earlier. So this year we have had no more "bad" notes no more your child is causing problem ect. Instead we have our son in a class where he is taught social behavior skills the way you would teach an english child Spanish and "Your son is reading at a 9-10th grade level and we want him into the gifted program". Where he is learning 10th grade level works (like building a bird out of legos (legos and computers are his "in" thing) and then connecting it to the computer and writing a program for the bird to sing and flap its wings).

My mother in law had since come clean with us that she didn't want "her grandson" to be different and we were like "well he is and if you had honestly looked at him as he was and not as you wanted to see him you would have seen what we did and helped us sooner" I understand it was hard for her to look at her grandson and see something was wrong I just wished I had followed my own instincts earlier so he would not have had to go through those 3 years thinking he was a "bad" kid. Hugs