...And the NOT So Little Things.

I struggled with whether or not to put this into this particular journal...but in the end couldn't think of a better place for it to go....

Just Starting Our Journey
pkwj829 posted:
Hi! I just found this group and have reading the posts...I am simply amazed and relieved to have found you all. What you are describing with your children could read like my sons life.

A little about us...We have a 10 year old son and an 8 year old daughter. We have just started the process to see if my son has aspergers or other autisim disorder.

He has huge social issues...his teacher described him as "awkward for his age" and that "kids tolerate him when they play". That statement just about tore my heart out. He wants to play, but says that he doesn't know how - his words.

When he wants to play, it has to be his way...this didn't appear to be too much of an issue when he was younger, but the older he (and his playmates) are getting, the more they don't necessarily want to do only what he wants.

He talks to loudly for almost every situation and place...he tends to want/need the attention to be on him. He 'obsesses' over his friends the way he always has over trains...dinosaurs...Pokemon....mythology - other kids just can't handle that.

His biggest challenge with other kids tends to be during periods of unstructured play - lunch/ recess, which has this year resulted in aggression and physical issues.. In a classroom setting, he doesn't seem to have the same issues.

There are other issues that he has also...

He is currently getting help through the school for speech issues, so they tested him in conjunction with that. They concluded that he doesn't meet their requirements, but that if we sought out a medical diagnosis, we would probably get it.

As part of this testing, they tested him academically. He has a reading level of 11th grade, with a 10th grade understanding level (without help) and an 11th grade level with help. His math problem solving skills are at a 10th grade level and his simple calculations at an 11th grade. He just turned 10 and is in the 5th grade.

From what I have read, high functioning autism and high intelligence often go hand in hand...is this generally the case?

I have had conversations w/his pediatrician (before the school testing was done) and will talk to her again about getting him tested further.

He has begun talking to a school social worker to help him with his social skills (for example, this week he learned about personal space) and they/we have put together a red/yellow/green light system for school and home that seems to have helped a little.

My question for all of you is what should I be looking at when deciding where to get him tested? Are there specific tests that I need to ask for that aren't always included?

I know that there is information that I have left out...I apologize for that, but for the most part it all seems to have been covered in other posts...behaviors and such. I really hope that sentence make sense...its late.

Thank you!

Karen



OH...one thing that I did forget to mention is that we have him on Bachs Rescue Remedy for his stress and anxiety.

The Ped. thought it was a good idea and I do think that it helps.

Other than that the only meds that he is on is for asthma and allergies.

thanks.
************************************************************************************
1 month ago
Indiaguerita responded:
Hey, Karen! Welcome to the group.

Just out of curiousity, what state are you in? I ask because in some states doctors won't even test for Autism until children are a certain age. (In Kansas, where I live...the child must be three years of age.)

Why hasn't anyone noticed the things that you mentioned that your son has trouble with? All of the things that you metnioned are definite signs of Autism (and more along the lines of Aspergers).

I am very impressed with his reading and math skills. That's amazing for any child at age 10! You asked if high intelligence and Autism go hand-in-hand. In my research of Autism I have read that children with Asperger's are often thought to be extremely intelligent because their speech is often very precocious and seemingly-advanced. The truth is, children with Aspergers are generally of average intelligence. For example, a child with Aspergers may be able to talk ad-naseum about their obsession (trains, pokemon or politics) but if you ask them about anything else, their speech becomes disjointed and they are very awkward.

However, I don't think this is the case with your son. It seems he is extremely intelligent.

I was thinking...even though he has some of the characteristics of Autism and Aspergers, have you thought of having his IQ tested? Maybe he is extraordinarily smart... Extremely intelligent people are sometimes mistaken as Autistic because of their social awkwardness.

If you have a behavioral psychologist, they will refer you to the place where he will be tested. You do not need to include any tests...the tests that they use are used nationally. You might ask them what specific tests they will use to diagnose him. There were about five tests that were used to diagnose my son...this includes an MChat, Cars and ADOS.

If your testing is anything like mine, it will last anywhere from three to five hours. They will ask you a battery of questions (ranging from 200-300 questions) and they will also observe your son and interact with him as much as he will allow. You might also be seen by a general doctor or a nurse practitioner to get his medical history and also to rule out any medical conditions. (For example: epilepsy.)

Post any questions you have and let us know how the diagnosis goes.

This is a fun and difficult journey. It can be very rewarding and sometimes it can be very stressful.

Again, welcome to the board. I will answer any question I am able to.

-Laura
************************************************************************************
Laura -

Thank you for your reply.

We are in Michigan.

How did this get missed for so long? Good question. We asked and asked about his speech (starting at about 3) and were told that his issues were age appropriate...this lasted until the first week of 2nd grade when his teacher started the process. You are right about the advanced speech - he had a vocabulary as a toddler that would rival a lot of adults.

Most of his 'issues' were chalked up to the fact that he is young for his grade and that he would 'catch up' maturity wise - it because VERY evident this year that this just isn't going to happen.

His academic level, I think is also the reason that this wasn't caught earlier. He has always done well in school...everyone was just waiting for him to catch up socially to his peers...again, not looking like that is going to happen on its own.

As far as issues with friends is concerned - this didn't become an issue until 3rd grade - the school has a 'friendship group' where they have several kids who have issues and teach them ways to interact and behave with other kids...Wyatt was involved in that in both 3rd and 4th grades.

We have always known that Wyatt was a bright kid - but after the testing that was done, I do want to get him tested further. I didn't know if that was included in the AS testing or not.

Also...on another note - we haven't said anything to Wyatt about the fact that we think he has AS. He knows that he has issues with friends, and for now anytime someone is going to talk to him about it, we tell him that we are all just trying to help him out with that.

Our issue though is w/my daughter. She is 8 and often takes the brunt of his verbal outbursts. For example - the other day, I told him to feed his turtle 'sometime today'. Well, it got to be really late in the day and I asked him to do it again. He got VERY upset and started yelling that it was still 'today' and that I said 'sometime today' not a specific time (which was true).

Josie took it upon herself to get the worms and bring them upstairs to feed the turtle...she said so that Wyatt wouldn't get in trouble. He, started yelling at her and calling her names (which we immediately put a stop to).

Now...I know that she needs tools to help her deal with all of this too. But without knowing exactly what the issue is just yet, how much should we be telling them? It isn't fair for her to have to walk on eggshells around him...yet I know that she can't 'deal' with him w/o knowing what she is 'dealing' with.

Does that all make sense???

Thanks again!

Karen
************************************************************************************

Karen - It's almost 11 p.m. here in Kansas and I am getting ready to begin my hour-long drive home from work.

If I am not too tired, I will reply tonight when I get home.

If not - I will reply in the morning!

I have some thoughts on your daughter and some of the other things you mentioned in your reply.

Talk to you soon.

-Laura
************************************************************************************

Kids with Aspergers (and Autism) need you to be extremely specific when you are giving directions.

So: Feed the turtles sometime today.

Should be: Feed the turtles by 5 p.m. today.



Is Josie old enough to understand the diagnosis if you explain it to her in private? Is she mature enough to not make fun of Wyatt? If so, I would definitely sit down with her and have a conversation. We told my five year old that Raymond was a little different than other kids and we even are teaching Ethan some of the ABA therapy to help deal with the verbal outbursts.

The way to deal with a verbal outburst (no matter how hurtful it may seem) is to completely ignore it and start a new conversation. So, Josie needs to walk away from Wyatt and engage in an activity that does not involve Wyatt. Wyatt may continue to verbally abuse her, but everyone must continue to ignore him. Once he is finished (and he will get tired of the screaming and yelling) he will join you guys and he will realize that he cannot have your attention by acting that way. Eventually, if Josie can keep ignoring the jabs at her, Wyatt will quit doing it.

Explain to her that if she keeps talking to Wyatt, even if she is saying that she is saying sorry, he will get more and more upset with her. The only way to stop him is for her to walk away and completely ignore him.

Of course, if he gets abusive towards her, that's a completely different story. And that needs to be intercepted immediately.


I am so sorry that it took me this long to respond. I have not been feeling great lately and have been working a lot of overtime these last two weeks.

Let me know how you're doing when you have time.

-Laura
************************************************************************************
How are things going? Don't know if you're still around.

-LJ
************************************************************************************
Sorry...yes, I am still here. Things have been VERY hectic.

We are still trying to find a place to get Wyatt tested - there are LOTS of places for help after the diagnosis, but not so many for the testing...at least that will work w/our insurance.

Thank you so much for your response a while ago, I apologize that I hadn't repsonded as of yet...

We are taking things a day at a time...sometimes good day, sometimes not.
************************************************************************************
Brixter1 replied to pkwj829's response:
I am 25 almost 26 and i was diagnosed with Aspergers here in Oklahoma. I have the same symptoms of your son. My parents have had a hard time with me. At least my mom says she could write a book about my life. Oh well welcome to the group i will help you out as well when i can.
Dylan

************************************************************************************
Indiaguerita replied to pkwj829's response:
No worries at all. I just missed seeing your posts.

How are things going at home? Has his behavior gotten any better with his sister??

Keep in touch. Take a deep breath!! You're not alone...

-Laura
************************************************************************************
Hi Dylan -

Thank you for responding.

If you don't mind...what were somethings that your parents did that you found particularly helpful?

There are times (like today) when things are basically positive...then something (seemingly) minor will happen and the whole situation goes into a tail-spin. Don't get me wrong, this same thing can happen with my daughter too, just not as often or on the same magnitude.

Thanks again!

Karen
************************************************************************************
Hi Laura -

Finally some time to sit down and collect my thoughts.

Things at home go up and down, but the more we learn, the more we are beginning to understand him a little bit better.

Oddly enough a friend of his from school has recently been diagnosed with AS. He seems to have a much higher anxiety level than Wyatt does and they chose to pull him out of school. He says things are better and his parents say things are "unbelievably" better.

Its strange, we thought and thought and thought about home schooling before Wyatt started pre-school, then decided that he needed the social interaction. Strange that the one thing we thought the school system could provide that we couldn't is the one thing he can't handle...

This family was nice enough to lend us a book called 'Let Me Tell You About Aspergers' (I think). Its written for kids ages 7-15, and give an outline of what its like to have AS. I read it as I was waiting to pick the kids up from school.

When we got home, I sent Wyatt upstairs with it. He came downstairs with this 'look' on his face...I really can't explain it. I asked him what it was about...he said "its about ME."

Oh, my goodness, talk about an overwhelming sense of relief and sadness all rolled into one!

I asked a few follow up questions and he really did understand that the book was about kids like him and that its OK to be the way he is.

We then sat down as a family and I read it out loud so that Josie could hear it...while I don't know that she got as much out of it as Wyatt did, it allowed us to open the door and talk about it.

I will say that, it is a subject that we won't be tip-toeing around anymore....which feels like such a huge burden being lifted.

We (and Wyatt) have rough days...a lot of them, but I think we are handling his 'issues' and 'behaviors' better.

We are still looking for the right place to get him tested, although my husband and I are sure that even if the tests come back that Wyatt doesn't 'have' AS, that he has some type of Autistic tendencies.

I don't know if we will keep him in school or decide to pull him out...both seem VERY plausible at the moment.

I just don't know...but we keep plodding forward everyday. He deserves that.

Thank you for checking in on us...I appreciate it.

Karen