OK, so it is ASD… how did I not see this?

[MyLittleBears]

I while ago I posted that I was finally going to the neuropyschologist for my boys.  I got my results two weeks ago and I've been trying to process it all.

 

My 11 year old got a moderate dyslexia diagnosis and a broader language disorder, with some mild fine motor delays. I was not surprised and it will be easy to accommodate his language difficulties with speaking clearly and more slowly. As soon as we do this, doc says the language issue is resolved and he learns like a typical kid. He will also require some OT for the fine motor. The dyslexia part is already been dealt with by using Barton, which was her recommendation, so we're doing the right thing. Yay! It was nice to get to hear that from a professional.

 

My 14 year old-- oy!  I was expecting Aspergers but he was diagnosed with Autism Spectrum disorder. The doctor had discussed this possibility with me but I got the impression that I was more just a social difficulty. I know they are really two sides of the same coin but I did not realize the severity of some of his impairments.  He has a very high verbal IQ but his working memory but is in the 1st percentile and his processing speed is in the 2nd percentile with everything else falling in between. I don't even know where to begin with this information! Cognitive rehabilitation was recommend but I was told this would probably only move his scores a little bit.  How do I school him now? What should my expectations for him now be? I feel totally unprepared. How is it that I just saw a quirky kid that was just a bit socially awkward? 

[ktgrok]

Hugs. I will say, I don't think they are diagnosing Asperger's anymore...that will now be called ASD...it's all lumped together now. So that might be something to consider. 

 

My son has some similar issues...he was diagnosed with asperger's, but that was before the definition changes. He also has a very high verbal IQ and her processing score is around the 10th percentil I think. Same with working memory. Doing narration and dictation helped more than anything, i think. But do it at his level, even if that is only a word or two at a time. The more practice the better. And the good thing is, often the long term memory is FINE. So if you can get it into long term memory, that frees up working memory. So memorizing math facts, etc, if he can. Learning to write down everything, use a calculator, etc. 

[IsabelC]

Sounds like you have got a lot to take in.  :grouphug:

 

A few points to consider:

 

1. AFAIK, Aspergers isn't actually an 'official' diagnosis anymore. With the latest DSM version, everything related to autism got rolled into the one ASD diagnosis. 

 

2. It's very difficult to accurately assess your own kids' difficulties. Even though you probably know him better than anybody else, you don't necessarily have in-depth knowledge of what's 'normal' for a 14yo. We all tend to get used to our own kids' individual strengths and weaknesses, so red flags aren't always obvious, and this is especially the case when it's the eldest child of the family. (I know for a fact that there were a few things I never realized my ASD son 'should have' been doing until a couple years later when his NT sister did those things). Also, as parents we sometimes compensate and make allowances for our kids' weaknesses without even being aware that we're doing this. Take away the unconscious layer of support and scaffolding (as in a neuropsych eval scenario) and suddenly any existing deficits become far more apparent. (Note that this is reflective of good parenting, so don't feel bad that you didn't pick up on things sooner!)

 

3. Don't get overly hung up about the scores. I understand it doesn't feel good to be told that your child is in or near the bottom percentile for anything (btdt), but remember the tests aren't totally accurate, the results aren't immutable, and even if they were, none of that makes your child any 'worse' than he was before you had him tested. The important point is that there is a large discrepancy between the different scores, which indicates his likely strengths and weaknesses relative to each other. This gives you valuable clues regarding what might help with his learning.

 

4. I would respectfully suggest that you not be in too much of a hurry to change anything. He won't suddenly become twice as challenging to educate because he now has a diagnosis! (Plus if he's anything like most ASD people, he won't be happy about starting a raft of new therapies and curricula all at once.) So continue on with whatever is working OK, and re-examine whatever is working badly in light of the new information you have. 

 

5. I haven't really done this with my kids, but considering your son is 14, I would try to get his input when it comes to considering any interventions or other changes you are thinking about making.

[PeterPan]

:grouphug:  That's a lot right before the holidays.  Does your state have resources to help you?  Our state offers an autism scholarship if you go through the IEP process and apply for it.  Any local support groups or social groups you can get connected with?

[8filltheheart]

((((Hugs))))). His situation sounds a lot like my ds. Bc our ds was diagnosed yrs ago, he does have an Asperger's label. The label doesn't mean much bc the people behind the word have vastly different functioning levels.

 

Ds has a high IQ but both his visual and auditory processing speeds are low, low, low. The first test he had they were in the 1st and 3rd percentiles. The second test he took they were in the 2nd and 18th. What they are is irrelevant. But, unfortunately for ds, it has meant a bumpy road.

 

Our ds is about to turn 23. Academically our ds is strong unless assignments are open-ended and then he falls apart. He is a very slow and methodical worker, but given time to finish straight forward assignments, he can and he does well. But say, come up with a project that demonstrates x, he doesn't have any idea of how to self-manage the process.

 

For him his difficulties have translated exactly like that into the workplace. He cannot cope with jobs that require a normal pace. nor can he handle jobs where the work is not repetitive and consistently the same. If a job is open-ended (like manage this project and be expected to figure out everything that needs to be done independently), his anxiety will overwhelm his ability to function and he will shut down.

 

He has taken way longer to grow up. Our 16 and 13 yr olds function on a more adult level than he does. He needs to be taught explicitly many of the normal things my other kids just know and do. Our ds lacks impulse control, so budgeting and prioritizing needs vs wants is a critical issue. He would not think twice about buying an Xbox game he really wanted even if it meant no food for a week. Helping him function like a responsible adult has been very exhausting.

 

But, there are glimmers of adulthood that do pop through every once and a while. He has been working full-time at Goodwill for about a yr and it has helped him mature quite a bit. He is starting to develop essential skills (like using the phone....when he first started there, he refused to talk to anyone on the phone. He still won't answer the phone BC he stresses that he doesn't know what to expect, but at least now he will make phone calls.)

 

I am really hoping that by around age 30 he might have enough skills to really function independently.....meaning budget, shop, eat healthily, pay bills, stay on top of laundry, plan for the future, all on his own. Right now he can't keep all the balls in the air simultaneously. But he is managing more than he used to.

 

It is hard. I am sorry you are having to face this. But he is still himself. Labels don't change who they are. They can help you understand, but it doesn't change them.

 

In hindsight, academics were not my ds weakness. Daily, normal, progressive functioning toward full independence--that was and still is what we work on.

[kbutton]

Sounds like you have got a lot to take in.  :grouphug:

 

:iagree:  with her entire post.

 

I have one son, 10, with ASD (he falls in line with PDD-NOS under the new guidelines). His processing is slow, but it is his non-ASD sibling with the single digit percentile scores. He's not that hard to teach (but he has strong visual and verbal scores--not a big discrepancy between them, and his working memory is not quite as low); it's hard to get output out of him. He just takes a long time, and his thoughts, feelings, etc. get jumbled in the wrong order and all askew. He has difficulty with sequencing things, not necessarily patterns--it's more like he has a giant yard of train cars waiting to get on the right tracks in his brain, and the person in charge is arguing about which car goes first. He has trouble learning things to automaticity that involve motor coordination (though, ironically, he was my kiddo that could run up to a moving ball and kick it on the first try shortly after learning to walk). We aren't sure of the reason for all his glitches, but he has speech glitches, likely CAPD, and as our OT says, he's probably a "D. All of the above" kiddo when it comes to what's affecting his processing.

 

As for the ASD-specific issues, I recommend reading up on things and seeing what stands out the most. It will be like peeling an onion. Our son is quite literal one day, and another day, he totally understands figures of speech. It just depends on the context. We are constantly surprised at the inconsistency of how it all plays out, but now that we realize it, we are more likely to look at a situation up front and prepare him for it. We were really good at this when he was little (and undiagnosed), but as he got older, we just thought he didn't need that advance work anymore. Well, he does! We really do need to interpret the world for him, at times, and then tell him how the world expects him to respond. And he's pretty okay with it when we do it well.

 

Enjoy your kiddos and congrats on doing so well with Barton for your 11 y.o.

[MyLittleBears]

Thank you for all the responses. It really helps me process things and put them into perspective.

 

I think I was thrown off by the doctor telling me that she suspected ASD OR "Aspergers". She said that he seemed "aspie" but this was before the testing. I realize they don't call it asperger's anymore,  and now its Social Pragmatic Communication Disorder, but still under the official ASD label. I know I'm splitting hairs but I thought it was more a social deficit  rather than a full autism label. I think my understanding was off. The more I read, the more I realize how wide the label is and how many variables there are even within one child.  

 

My problem is that I thought we had some educational and social issues that could be resolved with training and therapies. I was not quite prepared for the idea that he would always have issues and what that could possibly look like for his future. Will he be able to live independently, for example?  Will he go to college? Driving? Will he progress enough socially to be able to handle a marriage relationship?  Will his dad and I need to have "guardianship" rights when he turns 18?

All kids come with a certain "uncertainty" for the future but this seems to bring even more with it.  I feel as if I've been hit by a freight train. Just trying to process it all.

 

 

As far as support groups go, we do have one in our area. I'm not sure what else is out there as far as help. Do I need to go through the state's social services?  How intrusive will they be, especially knowing that we homeschool? I'm not even sure where to start.

 

[PeterPan]

I read a while back that getting that diagnosis is the equivalent of a PTSD experience.  Take care of yourself.  It's not your imagination that it feels like that.  

[kbutton]

My problem is that I thought we had some educational and social issues that could be resolved with training and therapies. I was not quite prepared for the idea that he would always have issues and what that could possibly look like for his future. Will he be able to live independently, for example?  Will he go to college? Driving? Will he progress enough socially to be able to handle a marriage relationship?  Will his dad and I need to have "guardianship" rights when he turns 18?

All kids come with a certain "uncertainty" for the future but this seems to bring even more with it.  I feel as if I've been hit by a freight train. Just trying to process it all.

 

The fact that you've made this distinction is very good. It's hard to "get" this fact, really. I still have to remind myself of it all the time even after processing this. Did your clinician help with this, or did you get it on your own? It may seem more bleak, but to miss this detail is far, far worse because you can't really prepare properly without this understanding. Good for you. It took me some time to figure this out and realize what all it meant.

 

As for the answers, that varies from person to person, relative success or failure of therapies (still valid even if it's not to make the issues go away), and lots of other things. We think we're going to have a fairly independent kiddo, but we don't know, and it all depends on how the parts and pieces come together. Independent is a big stretch of ground that means different things to different people (and by where you live--if you can't drive, that makes you dependent in some parts of the country and is nearly insignificant in others). 

[MyLittleBears]

Thank you ladies. I know I needed to hear from others who have walked this path before. 

 

Our doctor did not exactly tell us about expectations for his future. It was more like she knew how to talk to us so that we would ask the right things. She was very good, in fact, and her approach was sort of a gentle leading, if that makes sense. I love her for it. She also told us about some books that would help us understand it all. I am reading through Uta Frith's Autism - Understanding the Enigma. My next one will be Smart but Scattered. I'm praying a lot and learning to be more patient with him and myself.  Looking back I realize I probably pushed him past his capabilities but he more often than not, rose to the challenge. He's my new hero.

[kbutton]

Looking back I realize I probably pushed him past his capabilities but he more often than not, rose to the challenge. He's my new hero.

 

Aw. I bet he's a great kid.

[KSinNS]

Hugs. I don't think anyone is ever ready to hear the word autism. Even if you think you are prepared, you really aren't. It took me a long time to even be able to say autism without bursting into tears (to be fair, I was in total denial). It's a hard thing to hear, and you have to grieve. So give yourself time. And there are lots of adults out there with their autism. Some realize it, some don't. Some struggle more than others. Some function really well-I"m related to a few. But the label can help-it can help you to see what needs to be done, and it generates understanding. For example, my son was at a violin lesson with a new teacher, our teacher's dream next teacher for him. It was going badly. She couldn't figure out why he wasn't looking at her, why he was distracted. I said "oh, Christy didn't tell you, he has mild autism" and immediately, it was okay. She understood, so she could work with him. She was on his side, and that really helped! 

[bluedarling]

Just a word of encouragement.  My eldest got the same label two (or was it three?) years ago, about that same age.  I was horribly concerned at the time about my son's future, and that was what finally prompted us to get the dx.  In the last couple years he has changed so much!!  (I think social media helped...liking a girl helped...learning to drive a car helped...a very accepting youth group helped.)  Anyway, the point is that today I don't have any concerns that he will be dependent for the rest of his life (unless he develops mental illness...the psych did say kids with anxiety are at risk.)  But I really no longer have much concern for his future...and I spent a lot of time worrying about things that I didn't need to worry about!  You don't know the future, and this label does not change his future.  Relax, and just use this to help direct some special attention to the social skills you were concerned about when you got the dx.

 

ETA: a couple days ago I was relaying some information I had heard about Aspergers to ds17, and how the lack of social skills results in poor employment statistics for kids with Aspergers.  My son responded, "Mom, I am more social than you are!" (Ouch...truth hurts.  He really is, now! He is still a very slow processor, still won't make a phone call or go into a store on his own, but he has friends!  He starts conversations...more than I can say for myself!)

[MerryAtHope]

 I'm praying a lot and learning to be more patient with him and myself.  Looking back I realize I probably pushed him past his capabilities but he more often than not, rose to the challenge. He's my new hero.

 

It sounds like overall, your approach has helped him achieve more than he thought possible--and consequently perhaps more than might have been predicted if he had been diagnosed earlier. I'd guess that will continue to be the case. It's good to be aware that there can be limitations, but since "autism" is such a huge umbrella, it does make the future more unknown. Keep reading and praying--your love for your son shows through!