Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Autism - Support Across the Spectrum Autism - Support Across the Spectrum

I really need your advice and opinions Please

Posted by on May. 1, 2014 at 1:25 AM
  • 25 Replies



This is my beautiful 16 year old son Gabe. I have been a single mother since he was 8 months old and he is my world! I didn't know much about ADHD before Gabe and I knew even less about Autism until recently. Gabe has been diagnosed and treated ADHD since his kindergarten teacher insisted. Gabe had very few friends and couldn't hold still in class. Despite all that Gabe was always at the top of his class in grades. I served as most of Gabe's social time. Which I'll be honest I loved spending time with him, going to the movies, art museums, just hanging out, and listening to him talk about dinosaurs.

I did notice some things but I chalked it up to Gabe just being Gabe. Like he had to have a towel over his face when he washed his hair because he couldn't stand water splashing in his face, he refused to learn to ride a bike, and he would chew black tape like bubble gum but he hated actual bubble gum. He would not eat any fast food except pizza. It was always a battle to get him to brush his teeth!! Then I found him doing something more disturbing that I could/should have handled better, He started rubbing his poop on walls and the metal sides of his bed. I had no clue what to do. I shamed him, made him clean it, and grounded him. This went on for years. I talked to his ADHD doctor and she upped his Adderall which didn't help. Gabe started hiding in his closet and rubbing it on the walls in there. That lasted until he was 9 or 10 years old. Thank God he stopped that!

About 5th grade he started getting bullied bad. His grades dropped and he started pulling into himself. Then he started fighting and getting suspended The school always said they would take care of the bullies but then would say stuff like "Well, if Gabe would take off his winter coat in class it wouldn't happen as much" or "If Gabe wouldn't do things to bring it on himself as much". I talked to his ADHD doctor and she increased his meds again. Gabe started chewing his fingernails OFF!! I'm not talking down to the quick but like OFF leaving bare nail beds. That scared me so I called his doctor and she decreased his Adderall then put him on Prozac. That didn't help after pleading Gabe finally stopped months later. The next few years were more bullying, more fights, more suspensions, and more of me trying to get Gabe to open up and talk to me.

Middle School was a nightmare! The verbal bullying was really bad and the school continued the "oh we will take care of it but if Gabe would stop talking about dinosaurs, Pokémon, and video games it would be better" The kids started mocking Gabe calling him "soulless". Gabe lashed out at them and getting suspended. Then he started having "fits" in the classroom, running way from teachers down the hall screming, and hiding in the bathroom refusing to come out. I had never seen Gabe act like this. When asked what happened the principle would said "I wasn't there and the teacher is busy" Gabe would say he didn't remember. The principle went to the school board to try to have Gabe expelled. The board refused. I went back to Gabe ADHD doctor with all Gabe's school records to show what was happening. To tell her I think there is something else going on with Gabe. She changed his Meds from Adderall to Vyvance.

8th grade the school requested Gabe be tested for Special Ed classes. I agreed if it would help Gabe I was all for it. Gabe tested too high for Special Ed classes. The county independent tester said Gabe scored above average in the part of the test given orally and fell slightly below on the written. The tester said that was consistent with someone with ADHD. In English class he was asked to write about someone he admires and he wrote about me. I was a very proud mom :) Well in the hall after class this boy started yelling that Gabe wanted to have sex with his mom. Gabe choked him. The principle said while waiting on me to pick him up he was nervous and started chewing on the arm o the leather couch in his office. The school ended up expelling. I'm now homeschooling Gabe and working fulltime. Gabe seems to be doing better. He is coming out of his shell a little. He is actually doing school work and talking about college next year. He wants to be a Video Game Programmer and he now has small group of friends. The bad I can't get him to brush his teeth, bath as often as needed, brush his hair, change his clothes every day, or get his hair cut.

So I met this person who has a son with Autism and the more we talked and the more research I did the more it sounded like Gabe! So I went back to his ADHD doctor and requested Gabe be tested for Autism. So we went to the Specialist she referred us to in her office. He gave me questionnaire to fill out and Gabe a questionnaire also and that was the test. He said Gabe was on the spectrum but not enough to give him a diagnosis. He told me to get him some books on social skills. After he started asking why I wanted Gabe test and I told him I want to know how best to help Gabe. Gabe is talking about going to college soon and I want to get him as much help learning to cope and succeed in college. He was like but he is 16 years old and he doesn't seem to be worried about it. Then he proceeded to tell me I couldn't get a disability check on him. I told him I wasn't interested in check if I wanted that I could have got it for Gabe's ADHD a long time ago but I didn't!

Well, tonight Gabe and I went over the questionnaire. He told he would not answer definitely agree or definitely disagree on any of the questions because those are extreme answers. He would only answer somewhat agree and somewhat disagree. On the question "I find myself drawn more strongly to people than to things" He couldn't understand the question. He just looked at me funny I had to give him examples like I find myself wanting my video games more than being around people. He said that the only way he can tell someone is bored when talking to him is they look away. He finally told me he hates the taste of minty tooth paste and it makes his teeth feel too cold!! oh and grape, bubble gum, and cherry flavor children's tooth paste is out also they taste like medicine. Please tell, am I crazy or do I need to find another doctor and have him retested for Autism... away from that whole organization of doctors? Mother's what or your opinions. Does he sound like he has Autism or Asperger's? Or do you think it maybe be something else? I feel like the school failed him, the doctors failed him, but most of all I feel like I failed Gabe.


by on May. 1, 2014 at 1:25 AM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-10):
Gabesmom15
by Member on May. 1, 2014 at 2:31 AM
1 mom liked this

BUMP!

polkastria
by on May. 1, 2014 at 3:16 AM
1 mom liked this

I was in High School before I had an acurate diagnosis myself. I'm ADD, Dyslexic, and SPD (Sensory Processing Disorder). I was called just about everything under the sun at one point of another.  These days I'd probably be diagnosed with Aspergers but I'm 45 now so... whatever.


My final real diagnosis was from a place that specialized in learning disorders. None of the usual doctors got it right and to this day I'm still told that my ADD isn't usually found in adults or in women. They put me a social anxiety med once and all it did was make me sleep.  It didn't help me at all.

I would suggest you looks around for a place that tests for Learning Disabilities but they probably won't be covered by any insurance. 

It sounds to me like you could have an SPD kid on your hands. Mine are both SPD but in different ways.  Most people that test kids don't understand SPD and it still isn't officially a separate diagnosis since most of the time a kid with SPD is also autistic. But my kids and I are cases where it's not Autism related.

Try looking for the SPD Foundation online and take a look at the checklists.
You can google Sensory Processing Disorder and find some good info.
The Facebook page for Sensory Processing Disorder Parent Support is REALLY good and doesn't make you feel like you are the only one out there dealing with the weird stuff.

lancet98
by Bronze Member on May. 1, 2014 at 4:16 AM
3 moms liked this

You didn't fail Gabe.  

I don't think he would fall within the autism diagnosis, not based on what you have described, I agree with the doctor, though I'm far more qualified to agree with Julia Child, LOL.   The asperger's diagnosis doesn't exist any more, but high functioning autism covers that group of kids now.

And no.   I don't think he is autistic.   But he definitely has some autistic traits.  

And this really is the crux of a problem.   A LOT of kids are like Gabe.   They aren't severely affected enough to fall within the diagnosis, but they are having a tough time because of their traits.

Your son will always have a little bit of a tough time - bullies don't disappear when the high school diplomas are handed out.   All people won't be understanding and be perfectly nice to him.

You're going to be the main person for much of his life, who helps him navigate life.   He's always going to need you, maybe a little bit more than sons who don't have his traits.  You'll be looking out for him, and helping him along the way.

But no.   You haven't failed him.   You never, ever once, failed him.   He has a future, he has interests, he has things that he loves doing.  

Oh?   And about his hair?   Some day a girl is going to say to him, 'I like how your hair looks so much better when you wash it', and he'll start washing it.  

He reminds me of a professor I had.   Always a little fraction of a step out of step with the rest of the world.   Made deeply happy by the things he enjoys so intensely.  

Same smile, same tousled hair.

I call people like Gabe, my 'shining lights'.  They shine just a little brighter, for the unique souls that they are.   They give people a different way of looking at the world, a glimpse into the deep mystery that we all really are.   A little light shining, for those to follow, those who notice and appreciate.

And there are people like that.   No, not everyone is like that.   But they are there in the world too.   This is another part of the mystery of Creation, that in the midst of the bullies are the quiet people, who will pick a person up, dust them off and say, 'here, I can help'.    

You'll be watching out for him.   Get him into a college near home, keep his course load lighter than he thinks he can handle.   Keep him from running himself ragged, encourage him, gently, to have a little balance in his life...perhaps a few friends with his same interests.   A computer club.   Exercise is important too.

You've done good, mom.

SamMom912
by Gold Member on May. 1, 2014 at 7:17 AM

yes, I would look into SPD all of his issues sound very sensory based... Sometimes anxiety and spd can create an "autistic" look... But it does seem to me that he could possibly be very high functioning autistic.. BUT.. And you can go for a second opnion... Or you can just read up on Aspies/SPD and see what you can do to help guide and push him in the right directions. Michelle Garcia Winners has some wonderful books on socialization and its geared toward specific age groups.. Id check out her stuff on line. Richard Lavoie is a great read for kids with learning disabilities.. "Its so much work to be your friend." Was just a brilliant book.. Biel, Kranowitz are SPD gurus. And also, even though you are not sure he is an aspie- the asperger experts on youtube have some great great great videos- they even seel dvds of their best stuff and Ive found them and their persepctive really helpful 

Gabe sounds like a great guy.. You havent failed him. Not even close. 

darbyakeep45
by Darby on May. 1, 2014 at 7:31 AM
1 mom liked this

Hugs mama..you have NOT failed him!

Gabesmom15
by Member on May. 1, 2014 at 11:45 AM
Thank you so much!!! I can't believe how much it helpped getting all that out and hearing what you all have to say. :) I'm going to look up the book suggestions as soon as possible! Do you have any suggestions on tooth pastes?
Gabesmom15
by Member on May. 1, 2014 at 12:00 PM
Quoting lancet98:

You didn't fail Gabe.  


I don't think he would fall within the autism diagnosis, not based on what you have described, I agree with the doctor, though I'm far more qualified to agree with Julia Child, LOL.   The asperger's diagnosis doesn't exist any more, but high functioning autism covers that group of kids now.


And no.   I don't think he is autistic.   But he definitely has some autistic traits.  


And this really is the crux of a problem.   A LOT of kids are like Gabe.   They aren't severely affected enough to fall within the diagnosis, but they are having a tough time because of their traits.


Your son will always have a little bit of a tough time - bullies don't disappear when the high school diplomas are handed out.   All people won't be understanding and be perfectly nice to him.


You're going to be the main person for much of his life, who helps him navigate life.   He's always going to need you, maybe a little bit more than sons who don't have his traits.  You'll be looking out for him, and helping him along the way.


But no.   You haven't failed him.   You never, ever once, failed him.   He has a future, he has interests, he has things that he loves doing.  


Oh?   And about his hair?   Some day a girl is going to say to him, 'I like how your hair looks so much better when you wash it', and he'll start washing it.  


He reminds me of a professor I had.   Always a little fraction of a step out of step with the rest of the world.   Made deeply happy by the things he enjoys so intensely.  


Same smile, same tousled hair.


I call people like Gabe, my 'shining lights'.  They shine just a little brighter, for the unique souls that they are.   They give people a different way of looking at the world, a glimpse into the deep mystery that we all really are.   A little light shining, for those to follow, those who notice and appreciate.


And there are people like that.   No, not everyone is like that.   But they are there in the world too.   This is another part of the mystery of Creation, that in the midst of the bullies are the quiet people, who will pick a person up, dust them off and say, 'here, I can help'.    


You'll be watching out for him.   Get him into a college near home, keep his course load lighter than he thinks he can handle.   Keep him from running himself ragged, encourage him, gently, to have a little balance in his life...perhaps a few friends with his same interests.   A computer club.   Exercise is important too.


You've done good, mom.



Thank you for your post!. It is a local college he wants to go to but I have to admit when he said that he wanted to try staying in the dorms his freshmen year I started picturing him in his dorm room in his boxers, dirty, missing classes, playing video games for days, and not eating for days. LOL I can't believe I have become THAT mom! It is funny you mention about the professor because I hear that a lot. I hear stories of some science or history professor that is at such and such college that reminds them of Gabe. The Disorganized, absent minded, quirky professor that is all about and excited about his subject. I love those stories. I could see Gabe being like that. He would be the quirky Video Game Programming professor lol. Thank you... you really brought a smile to my face!
Gabesmom15
by Member on May. 1, 2014 at 12:57 PM
2 moms liked this

Mobile Photo

One of the few times Gabe got his hair cut. My dad told him if he got his hair cut my dad would get a crew cut lol boy did dad look funny until it grew out! I am one proud mommy
Bobcatridge
by Carol on May. 1, 2014 at 12:59 PM
1 mom liked this

I think Gabe might be high functioning autism spectra (or asperger's which doesn't exist anymore) - he might be on the autism spectra.  His answers to the questionnaire may have changed the results of the evaluation.  I would call the doctor back and tell him that Gabe would not do the definitely agree or definitely disagree responses.  From your description Gabe does not seem solely ADHD.  I think more testing is appropriate.

Getting a correct diagnosis is challenging.  I thought my daughter was aspergers when she was 7.  She was already diagnosed with Generalized Anxiety Disorder.  When she was 10 the psychiatrist we went to said she was clearly autistic and was appalled she hadn't been officially tested and diagnosed as such.  The state testing facility he referred us to refused to test because they said she wasn't bad enough.  I blame that response on myself because of the way I responded to their questions.  I just didn't realize all the problems she was having.  Another psychologist said she wasn't autistic just really quirky.  When she was 11 she was tested and diagnosed as aspergers by a different autism group.  The original psychologist then diagnosed her as PDD-NOS and now the diagnosis is high functioning autism, generalized anxiety disorder, and major depressive disorder from the same psychologist.  My daughter has just turned 13 and this summer we plan to do neuro psych testing to get a better understanding of her specific problems.  Her problems became more evident and specific as she grew older.

Macphee
by Silver Member on May. 1, 2014 at 1:25 PM
1 mom liked this
Hugs. You are a great mom. I would get Gabr evaluated by an occupational therapist. He or she would help with his sensory issues. As hard as this will be for you, clubs of any interest would be great. He sounds as if he has to socialize with peers. Look into anything he shows interest in. Dinosaurs, museum volunteer.

Toothpaste will be hard, but positive reinforcement. He gets video game or computer time after he's done this that and the other, try to get his doctor to write a referral for applied behavior analysis. It sounds as if he would benefit from that. Personal question: any male role models for him?
Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

close Join now to connect to
other members!
Connect with Facebook or Sign Up Using Email

Already Joined? LOG IN