Help me think this through... ASD diagnosis

[Storygirl]

I apologize in advance, because this is probably going to be long. DS11 was diagnosed by a NP with NVLD, and he also has SPD, DCD, ADHD combined type, anxiety, and SLD in math and reading comprehension, social delays, extremely low pragmatic scores. Sigh. I'm probably forgetting something; it's a lot. But he's also the type of kid who can pass as NT in many environments; we've had plenty of people tell us that they don't think he is autistic (including the NP). He is in school this year and is functioning well in that structured environment; his behavior issues mainly come out at home.

 

His IEP is still in progress, but he is getting help for his learning issues and social (working with a speech therapist on a specific school-related goal) at school.

 

We have the paperwork sitting here to start the process for having him evaluated for possible ASD at an autism clinic. He has never had a thorough ASD screening, and he does meet the DSM criteria as far as I can tell as a layperson. Last fall we rushed to try to find someplace that could screen him for ASD before his school IEP evaluations were completed, but we ultimately decided that we didn't want to rush it; we wanted to find the best place and do it right and thoroughly (the place we found was willing to screen him but was only going to run one test). Some of you may remember me posting about it a few months ago.

 

We have always had a suspicion of ASD. Always, since he was a toddler. But there are so many things mixed in there, that we were always able to say, "Well, maybe this is the ADHD, or the anxiety, or the SPD or......" So we suspected but wavered.

 

Here are my questions about pursuing the ASD diagnosis at this point....

* What difference will it make if we call it ASD? Why get the diagnosis?

* If we are getting help for the various symptoms and behaviors anyway, what will change?

* What therapies or assistance or whatever could we access with an ASD diagnosis that we can't already?

* How do we know if we need those autism-specific therapies?

* Looking to future years: Are there reasons that an adult would want to have an ASD diagnosis? Are there services for a high-functioning adult with ASD that he wouldn't be able to access without a diagnosis?

 

And a couple of additional notes:

* I tend to want the diagnosis so that I can know, just because I want to know. But I'm questioning whether it is actually important beyond that. DS11 is tired of going through evaluations (who can blame him), and he is kind of a non-self-aware guy. Meaning, knowing that he has learning challenges seems to have no effect on him or his feelings about himself. So I'm not sure that it will benefit him to have another label for himself. He just doesn't ponder things like that.

 

* Our state has a disability scholarship, and we would likely have access to a larger pot of money for services if he had an ASD diagnosis. But let's set that aside for now and not consider it as part of this discussion. I need to have a clearer vision of what kind of help/services we might want to pursue; then I can think about whether we need funding for them.

 

[Chalex]

* What difference will it make if we call it ASD? Why get the diagnosis?

Here in Canada, signing the official papers for the school file gives us better leverage for demanding services if they aren't being provided.

There is also government tax credit that you can apply for, which can help pay for therapies outside the school.

 

* If we are getting help for the various symptoms and behaviors anyway, what will change?

The diagnosis causes teachers to treat kids with ASD differently within the school.  (Knowing that he's not just a difficult child...looking out for sensory issues...)

 

* What therapies or assistance or whatever could we access with an ASD diagnosis that we can't already?

Not sure, my son was offered the opportunity to not take french class, which is in the provincial curriculum.  He also has his own laptop and a teaching assist to help at times.  Oh, and the school is prepare for him to have time outside the classroom if he needs it .

 

* How do we know if we need those autism-specific therapies?

The school board psychologist and OT may make recommendations.

 

* Looking to future years: Are there reasons that an adult would want to have an ASD diagnosis? Are there services for a high-functioning adult with ASD that he wouldn't be able to access without a diagnosis?

Can't answer this one, but would love to know!

Edited January 16, 2016 by Chalex

[Guest]

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Edited February 10, 2016 by Guest

[Guest]

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Edited February 10, 2016 by Guest

[Crimson Wife]

* What difference will it make if we call it ASD? Why get the diagnosis?

* If we are getting help for the various symptoms and behaviors anyway, what will change?

* What therapies or assistance or whatever could we access with an ASD diagnosis that we can't already?

* How do we know if we need those autism-specific therapies?

* Looking to future years: Are there reasons that an adult would want to have an ASD diagnosis? Are there services for a high-functioning adult with ASD that he wouldn't be able to access without a diagnosis?

 

* Our state has a disability scholarship, and we would likely have access to a larger pot of money for services if he had an ASD diagnosis. But let's set that aside for now and not consider it as part of this discussion. I need to have a clearer vision of what kind of help/services we might want to pursue; then I can think about whether we need funding for them.

 

If your state has an autism mandate for health insurance a formal diagnosis of ASD is necessary to receive services through that. Coverage for Applied Behavioral Analysis, speech therapy, and occupational therapy is mandated in my state for children with autism. SLP's can target pragmatic language use & Theory of Mind even if the child is verbally advanced in terms of vocabulary and syntax.

 

If there is a chance that your child might not be able to hold down a job as an adult, then having the ASD diagnosis on file would make it significantly easier to qualify for SSI. I have been told that getting deemed "disabled" by SSI as a child (even if the family has too high of an income to receive a monthly benefit) makes it more likely to qualify for SSI as an adult.

 

My school district has a special transitions program for those with Asperger's/HFA in partnership with the local community college. This is for students who have graduated high school but are younger than 22. Students attend 1-4 days per week with each day focusing on a specific area: academics/cognitive, social interaction, independent living skills, and career exploration/vocational skills. So if my DD was fine academically but needed help with the other areas, she'd attend 3 days/week.

 

The one negative to getting an ASD diagnosis would be if your DS hoped to have a military career. I've been told that an ASD diagnosis is a disqualifying condition. My DD would be disqualified on the basis of her hearing loss so that's not a concern for her.

 

ETA: A big one that I almost forgot is that the ASD diagnosis qualifies my DD for secondary coverage through Medi-Cal (CA's Medicaid) and that picks up the deductibles and co-pays for any approved medication, therapy, office visit, lab work, or procedure.

Edited January 16, 2016 by Crimson Wife

[Mom22ns]

o say, "Well, maybe this is the ADHD, or the anxiety, or the SPD or......" So we suspected but wavered.

 

Here are my questions about pursuing the ASD diagnosis at this point....

* What difference will it make if we call it ASD? Why get the diagnosis?

Here an ASD diagnosis gets some guaranteed accommodations and services that none of your other diagnoses do.

 

* If we are getting help for the various symptoms and behaviors anyway, what will change?

Nothing. The only thing that might change is that you might qualify for more services or receive more financial support for services.

 

* What therapies or assistance or whatever could we access with an ASD diagnosis that we can't already?

In my state the answer is yes. I don't know what therapies you are already getting or what assistance you are getting to know if that will change for you.

 

* How do we know if we need those autism-specific therapies?

​I don't think there are any autism specific therapies. Autism looks different in every kid. The therapies are based on the issues he is having dealing with life and the world. If he is already getting those, there probably won't be new ones with the diagnosis.

 

* Looking to future years: Are there reasons that an adult would want to have an ASD diagnosis? Are there services for a high-functioning adult with ASD that he wouldn't be able to access without a diagnosis?

Our case worker told us that ds could get SSI based on his diagnosis and that SS rarely investigates further with an autism diagnosis. Again, this would be harder without the diagnosis. Ds doesn't want SSI, so it doesn't really matter, but having the diagnosis will make that possibility easier if the need is there.

 

And a couple of additional notes:

* I tend to want the diagnosis so that I can know, just because I want to know. But I'm questioning whether it is actually important beyond that. DS11 is tired of going through evaluations (who can blame him), and he is kind of a non-self-aware guy. Meaning, knowing that he has learning challenges seems to have no effect on him or his feelings about himself. So I'm not sure that it will benefit him to have another label for himself. He just doesn't ponder things like that.

Yep, it was only me that needed to know, not ds. I get that.

 

* Our state has a disability scholarship, and we would likely have access to a larger pot of money for services if he had an ASD diagnosis. But let's set that aside for now and not consider it as part of this discussion. I need to have a clearer vision of what kind of help/services we might want to pursue; then I can think about whether we need funding for them.

We got funding for several things through our state Dept. of Mental Health. The ASD diagnosis opened those doors. They might have been open with the diagnoses your son already has, so I can't say for sure it would have made a difference. For us the schools in our state treat an ASD diagnosis differently. It gets a guarantee of an IEP and services. Services that other diagnoses have to fight for are easy with an ASD diagnosis.

 

I really can't say if you will get any more services or assistance with an ASD diagnosis. However, it is possible and that diagnosis will open doors for testing accommodations, college accommodations, Social Security and more. All of those things are possible with other diagnoses too, so there is nothing that says he has to get a new one, but that ASD labels does open doors. I think it is worth it because you just can't know what doors he will need opened in the future.

[kbutton]

I am agreeing with the SSI and other potential open doors. That is not to say that you have to do this now. You could do in a year.

 

The other thing to consider is that some districts near us have autism panels of some kind at the school district level. In those districts, apparently you can get an IEP that says autism as the qualifying condition without getting a medical diagnosis. They don't diagnose, but they will make the determination that the issues they see are consistent with autism and do the IEP accordingly (which qualifies the student for the state scholarship, I believe--maybe you still need a medical diagnosis for that, but I don't think so). Anyway, with all the trouble some people are having, this is pretty shocking to me. But a friend has been advised to go this route with her son by someone inside the school district that does this day-in and day-out. If my friend needs a medical diagnosis to pursue specific things, such as support from the board of developmental disabilities, then she can pursue that too. But this gets the ball rolling for free.

[Mom22ns]

The other thing to consider is that some districts near us have autism panels of some kind at the school district level. In those districts, apparently you can get an IEP that says autism as the qualifying condition without getting a medical diagnosis. They don't diagnose, but they will make the determination that the issues they see are consistent with autism and do the IEP accordingly (which qualifies the student for the state scholarship, I believe--maybe you still need a medical diagnosis for that, but I don't think so). Anyway, with all the trouble some people are having, this is pretty shocking to me. But a friend has been advised to go this route with her son by someone inside the school district that does this day-in and day-out. If my friend needs a medical diagnosis to pursue specific things, such as support from the board of developmental disabilities, then she can pursue that too. But this gets the ball rolling for free.

 

Here you can have an "educational autism" diagnosis from the school district without a medical diagnosis. We stuck with that as opposed to a medical diagnosis. It opened all the doors until we got to the possibility of SSI. No one could tell us if it would work for that or not, but then ds said he didn't want to apply anyway, so we let it go.

[Storygirl]

Thank you. I'm pondering things. It's hard to look ahead with any accuracy to consider whether he might someday qualify for disability. He has so many layers of disability that he is inhibited in practice more than you would think upon first meeting him. And it is the prevailing wisdom that NVLD becomes more debilitating with age (we know the NVLD diagnosis is correct, whether or not he has ASD as well). So I'm trying to be realistic in my expectations for the future, while also having hope that he can improve in some areas with intervention. Truthfully, though, I've been feeling discouraged lately and have been thinking about worst outcomes. How will he hold a job that will allow him to be self-supporting or provide for a family? I worry.

 

I'll ask our IEP case manager about an educational designation of autism when we talk with her next. I don't know if that is possible here, but I haven't asked. Whenever we brought up autism at our IEP meetings, they did not respond to it at all, other than to say, "let us know if you figure it out." Sigh.

[Crimson Wife]

Thank you. I'm pondering things. It's hard to look ahead with any accuracy to consider whether he might someday qualify for disability. He has so many layers of disability that he is inhibited in practice more than you would think upon first meeting him. And it is the prevailing wisdom that NVLD becomes more debilitating with age (we know the NVLD diagnosis is correct, whether or not he has ASD as well). So I'm trying to be realistic in my expectations for the future, while also having hope that he can improve in some areas with intervention. Truthfully, though, I've been feeling discouraged lately and have been thinking about worst outcomes. How will he hold a job that will allow him to be self-supporting or provide for a family? I worry.

 

I worry about my little one because the current stats are really bad for both autism alone and deafness alone (it's 80% adult unemployment for each). Now granted that's based on the previous generation who by and large were not able to benefit from the kind of intensive early intervention that my DD has received since her 2nd birthday. I certainly hope that by the time her generation becomes adults that the stats will be much better. But realistically, I know having both the physical and the developmental disability will mean that she's going to face a lot of challenges securing and maintaining a decent-paying job. The hope is that she can find her niche like Dr. Temple Grandin did, but only time will tell on that.

[Guest]

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Edited February 10, 2016 by Guest

[Storygirl]

Crimson, thinking about the statistics can be worrisome :(. Cricket, I appreciate your mindset! 

 

Part of my discouragement lately is in thinking about what path we should head toward for high school. It's unlikely that we would return to homeschooling, and the school that my children attend now only goes through eighth grade. DS11 will only be in middle school next year, but I have a friend looking at high schools now for her SN kids, and I'm learning through her what is available in our area. The choices are limited, and of the limited choices, we will want to think carefully about where to place him, based at least partly on his life and employment goals, not just academics. We want to be sure to start him on a path that can lead to success -- however that is defined in his life.

 

Anyway, I think we could wait a year or two before deciding whether to look more into ASD evaluations, and I don't think there would be a big downside to waiting, other than the Not Knowing. Except that this year he has only two main teachers at school, so they have had the chance to observe him and get to know him pretty well. Starting next year, he will have a different teacher for each period of the school day, so they will see him for less time. Because the autism clinic requests teacher input, there may be an advantage to moving ahead with it this year and getting the input from teachers who know him well.

 

On the other hand, we are pretty busy with evaluations of different sorts for three of our children this year already. So there is a part of me that would be relieved to put this one endeavor off for a bit longer.

[Guest]

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Edited February 10, 2016 by Guest