What is the value of having an Asperger's diagnosis?

[Aspasia]

I have good reason to believe that my ds5 may have mild Asperger's (not least of which is the fact that I have a brother and a few cousins with it--so these traits are familiar to me. Heck, I even share some of them myself!). Dh is hesitant to pursue those concerns and have ds possibly diagnosed, because he says, "What's the point? What is it going to help?" I think it is worth pursuing, so we can learn what our resources are and help ds to get along in life.

 

So I need some help from parents who have btdt. How has your child's Asperger's diagnosis helped you and/or your child?

 

 

[Tanaqui]

As an autistic individual, I can think of a few benefits.

 

First, if your child needs special services for something he has problems with, you may need a diagnosis to get those services. It certainly won't hurt. Where I live, there are even special programs at museums and such specifically for children on the spectrum - but you need a formal diagnosis to get in.

 

Secondly, if you intend for your child to enter school at any point, or if that ends up happening anyway, having a formal diagnosis is crucial for getting any accommodations he may need. And even if he doesn't go to school, he may need accommodations in college or at work, and it might be a lot easier to get that diagnosis *now* rather than wait a few decades.

 

Thirdly, I firmly believe, based on my personal experience, that it is helpful for children to have a name and an explanation to put to their differences. Children *do* know when they're not like their peers. I certainly did. And my parents *knew* I was autistic - but they never told me. This had lasting effects on my self-esteem. I'm sure they meant well, but it utterly backfired. If you ask autistics who were diagnosed as adults, many will tell you how relieved they were to know they weren't lazy or stupid, that there was a reason for being different. Even if you decide not to pursue a formal diagnosis, you should strongly consider discussing the issue with your son.

[ktgrok]

Well, it helped him and I know that his...issues...weren't him being a jerk, they were real issues. That was good for our relationship. Also, my state now offers money to parents with kids on the spectrum that choose to homeschool instead of using public school, so he will be getting almost 10K a year towards homeschooling expenses, and anything left over can be put towards college expenses. 

[Aspasia]

As an autistic individual, I can think of a few benefits.

 

First, if your child needs special services for something he has problems with, you may need a diagnosis to get those services. It certainly won't hurt. Where I live, there are even special programs at museums and such specifically for children on the spectrum - but you need a formal diagnosis to get in.

 

Secondly, if you intend for your child to enter school at any point, or if that ends up happening anyway, having a formal diagnosis is crucial for getting any accommodations he may need. And even if he doesn't go to school, he may need accommodations in college or at work, and it might be a lot easier to get that diagnosis *now* rather than wait a few decades.

 

Thirdly, I firmly believe, based on my personal experience, that it is helpful for children to have a name and an explanation to put to their differences. Children *do* know when they're not like their peers. I certainly did. And my parents *knew* I was autistic - but they never told me. This had lasting effects on my self-esteem. I'm sure they meant well, but it utterly backfired. If you ask autistics who were diagnosed as adults, many will tell you how relieved they were to know they weren't lazy or stupid, that there was a reason for being different. Even if you decide not to pursue a formal diagnosis, you should strongly consider discussing the issue with your son.

 

Yes, your third point especially resonates with me. As I mentioned in my first post, I have a brother with diagnosed Asperger's and a few cousins. I can honestly relate to a lot of Asperger's traits and I've always felt kind of "weird", like I didn't "get" a lot of the social things other people seemed to intuitively understand. If my son ever feels even remotely like I have felt all my life, I would love for him to have an explanation and the knowledge that he's not "weird" and there are lots of other people just like him.

[Tanaqui]

Bucolic, you may find some personal answers with the concept of the "broader autistic phenotype", although that won't do you any practical good. Interestingly, I suspect that my parents' placement on the broader autistic phenotype is partially why nobody told me anything growing up. They knew I wasn't typical, they even had a name for it, but their perception of normal was completely skewed by how they and their families acted, so they weren't quite aware of how NOT normal I was. This is further exacerbated by their habit of primarily choosing friends who also present on the spectrum, which when you get right down to it is probably how the two of them got married in the first place.

[justasque]

I have good reason to believe that my ds5 may have mild Asperger's (not least of which is the fact that I have a brother and a few cousins with it--so these traits are familiar to me. Heck, I even share some of them myself!). Dh is hesitant to pursue those concerns and have ds possibly diagnosed, because he says, "What's the point? What is it going to help?" I think it is worth pursuing, so we can learn what our resources are and help ds to get along in life.

 

So I need some help from parents who have btdt. How has your child's Asperger's diagnosis helped you and/or your child?

A diagnosis is a tool, which, to some extent, can be used when it is a good tool for the task at hand, and put to one side when it is not needed.  Most homeschooled kids at some point enter a more formal schooling situation (even if it's not till college), where having a diagnosis is the key that opens the door to understanding and accommodations.  Without the key, those things can be hard if not impossible to access.  You don't need to think of it as a negative label - it's just a "key word" that can help you to find and access resources that can help you to raise your son, using all of the wisdom that other experienced parents and professionals have accumulated.

[8filltheheart]

How does not having a diagnosis help?  

 

Therapies are more effective when they are younger.  Knowing what exact issues you are dealing with enables you to help them understand themselves.  Accommodations are only an option with a diagnosed disability.  As an adult, they are are eligible for services through the state.  Our ds has specifically used the Dept of Rehab for job placement, job coach (which can cost in the range of $45-$60/hr), and driver's ed.  (He ended up quitting due to anxiety.  But the driver's ed professional was awesome.)

[PeterPan]

Bucolic, you may have two issues you're unwrapping there, one is whether he's anti-label overall, and two is whether there's something that would change as a result of having correct information.  There are people who are happy for other people to have labels but feel labels have a stigma and don't WANT those labels for their kids.  If that's what he's really saying, there's no way to bust through that except to confront it and be honest about it.  My dh was cool with certain labels but not other ones.  A dyslexia label, an ADHD label, those are easy to handle.  Get the ASD label on the table, and out comes all this emotion about his son, his progeny, labels are bad, etc.  My own opinion, fwiw, is that it's wise to bust through that and get the information.

 

To the 2nd part, what having a correct diagnosis would do, well just the fact that he's asking means he doesn't understand the diagnosis enough to realize.  We now have AMAZING interventions and options, that, as 8Fills points out, are best done EARLY.  We now understand the variety of affected areas and can intervene better, whether it's OT issues (retained reflexes, sensory, etc.), anxiety, social skills and theory of mind, you name it.  So to say getting a proper diagnosis and becoming aware of those struggles and getting connected with resources would change NOTHING is uninformed.  (I'm trying to be polite and restrained here.)  Or to flip it, to REFUSE to get him eval'd when you KNOW he is exhibiting the traits is to REFUSE to get the interventions that could CHANGE THE COURSE OF HIS LIFE.  

 

So let's be straight.  The problems don't go away because you ignore them.  The outcomes are DRAMATICALLY better with early interventions.  You even have OPTIONS.  It's not like you're saying hand the kid over to some system and you have no choice.  Our psych actually said skip ABA and do other things.  You have choices now.  But you can't make those choices when you don't have information.  And personally, again this is just me, I think it's really questionable to say a person who kisses the spectrum themselves is the best person to say mild or not.  My ds varies from almost normal to astonishingly bad.  I'm not observant enough to pick up on patterns, kwim?  I just wouldn't play that game of it's mild and doesn't need support.  Yes our current ASD levels 1-3 communicate levels of support and he'll get a number.  But it's going on or he wouldn't be getting an ASD label, kwim?  Even if it steps down into ADHD with social delay or SCD, still it needs support.

 

The unpretty thing is to be a teen who didn't get the supports.  Parent without regrets.  You know now and suspect now.  Listen to your gut and get the evals so you can make informed choices about areas to intervene on.  ASD is a global issue, so he needs global evals (psych, speech, OT).  Then you can have fuller information to make informed choices and then your dh will see what areas are affected that should change.

[Aspasia]

^ Thank you so much for the straight talk. I really, really appreciate it.

 

So, where do I go from here? Do I start with the pediatrician or can I go straight to a specialist? (And I'd really prefer to have my first conversations without ds there. I don't want him to feel like I think something is wrong with him. Is that how they do it?)

[Pegs]

I love the questions you're asking here.

 

The label wasn't really useful to me until I discovered the social model of disability. For years I thought that the diagnosis was meant to help because it would give me insight and help me learn to be less autistic. Now I understand that this was not a healthy way to respond.

 

I have enjoyed learning about autism from autistic adults, and encourage you and your DH to do the same.

[Tanaqui]

For reference, here are some links on the social and medical models of disability. (There are other models you sometimes encounter, such as the cultural model which you see most prominently in the Deaf* community, but those are the biggies.)

 

When it comes to autism, a social model view might be that autistic individuals have a variety of strengths and deficits (just like everybody else), and that while some particular issues may need to be treated or accommodated (we all want children to be able to communicate in a way that others can comprehend, for example, and we don't want people to self-harm), that's not necessarily the same as curing autism nor as prenatal screening - and, of course, NT children and adults *also* have things going on that they need help with or accommodations for.

 

* IIRC, the big D in Deaf indicates somebody who identifies as a member of Deaf culture, rather than little d deaf which is just, you know, a person who can't hear or can't hear very well.

[PuddleJumper1]

On a practical level - some insurance companies require an ASD diagnosis by a certain age in order to cover services. We ran into that with ours last year. We had to provide medical documentation that ds had his diagnosis before the age of 8 or they wouldn't cover the therapy we were requesting. 

 

Agreeing with everyone above on other reasons to get him a proper diagnosis. 

[mellifera33]

On a practical level - some insurance companies require an ASD diagnosis by a certain age in order to cover services. We ran into that with ours last year. We had to provide medical documentation that ds had his diagnosis before the age of 8 or they wouldn't cover the therapy we were requesting. 

 

Agreeing with everyone above on other reasons to get him a proper diagnosis. 

 

Does anybody know if "before the age of 8" is a common cutoff to receive asd services? This makes me a little bit nervous--ds turns 8 next month, and possibly has ASD. Our insurance is changing next month and I don't have access to the particulars yet, so I can't look this up. Plus, DH's employer seems to change insurance companies every few years. 

[PuddleJumper1]

Does anybody know if "before the age of 8" is a common cutoff to receive asd services? This makes me a little bit nervous--ds turns 8 next month, and possibly has ASD. Our insurance is changing next month and I don't have access to the particulars yet, so I can't look this up. Plus, DH's employer seems to change insurance companies every few years. 

 

The therapy we were getting approval for is ABA. It was the first time we had to provide that documentation. Until they asked I had no idea the clause even existed in our policy.  We are changing companies in a few months so it will be interesting to see if they require the same. 

 

A friend's policy had the age of 10 so, if a company has such a clause (and I don't know that all do), the age is variable.

 

ETA - found this link http://www.asha.org/Advocacy/state/States-Specific-Autism-Mandates/  It shows some information state by state. I'm in FL and the 'age of 8' (for dev dis not specifically ASD) is stated here. Very interesting. We've been here since his birth and have never had to prove his age at dx but ABA is the first ASD specific therapy we've requested. He has other reasons that qualify him for speech, OT and PT. 

[Crimson Wife]

Does anybody know if "before the age of 8" is a common cutoff to receive asd services? This makes me a little bit nervous--ds turns 8 next month, and possibly has ASD. Our insurance is changing next month and I don't have access to the particulars yet, so I can't look this up. Plus, DH's employer seems to change insurance companies every few years. 

 

It doesn't necessarily have to be a formal ASD diagnosis, but there has to be the paper trail that symptoms consistent with an autism diagnosis were present early on (even if the diagnosis at the time was something else like mixed expressive-receptive language delay).

 

One of my brothers got an ADHD diagnosis as an adult, and he had to provide documentation from his elementary school report cards showing that he had the symptoms as a kid.

[PeterPan]

^ Thank you so much for the straight talk. I really, really appreciate it.

 

So, where do I go from here? Do I start with the pediatrician or can I go straight to a specialist? (And I'd really prefer to have my first conversations without ds there. I don't want him to feel like I think something is wrong with him. Is that how they do it?)

Depends on what you want done.  If you have insurance that will begin covering just with a ped diagnosis, then obviously take it.  You're going to want full evals on everything (OT, psych, SLP, etc.).  If your state has a disability program, you'll want to jump through their hoops.  So it's all about the hoops. You want it all sooner or later, and if you know a disability program wants the multi-factored eval to qualify, then you might as well start at a place that does that.  If you don't need that, then you can piecemeal and take your time.  It's all just coverage, hoops, what you can get into first.  You're probably going to need the per referral for your insurance.  

[Crimson Wife]

A developmental pediatrician did my little one's initial diagnosis of HFA. It was subsequently confirmed by a pediatric neurologist and I really should've started with her because she only had a 3 week wait vs. the 6 months we waited for the developmental pediatrician.

 

Later on we saw a pediatric neuropsychologist, which was useful for a more complete pattern of the strengths and weaknesses. But there's no way that my little one could've done the NP testing prior to this summer, and even now there were some tests that couldn't be performed because DD doesn't have the language skills yet for them.

 

I have a friend who is an ed therapy student and she tried to run a CTOPP on my DD the other day (since the NP didn't) and it quickly became apparent that DD wasn't able to understand most of the directions for the various subtests. Now I understand why the NP didn't do one.

[Innisfree]

Nm

Edited May 15, 2019 by Innisfree

[Innisfree]

Nm

Edited May 15, 2019 by Innisfree

[merry gardens]

This thread caught my interest because my brother-in-law was diagnosed with Asperger's a year after his father (my father-in-law) died. I'm watching from the sidelines, but the diagnosis has helped me make sense of some family dynamics and given me better insight towards my mother-in-law. It's helped my relationships with her as things that didn't make sense now make more sense.

 

One other thing not yet mentioned-many people on the spectrum have other health issues and may respond differently to meds--and it's in their best interest that doctors who treat them to know what's all going on with them. Normal doses of medication may be too high for them and bring on negative side effects. Before his Asperger's diagnosis, my BIL had one of those weird flip-out, violent responses to a medication that put him (and others) at risk of harm. He's also had a long history of gastro-intestinal problems--and doctors weren't clued into what the problem was. Apart from getting treatment and help for "Asperger's" per se, it could be helpful in the overall medical care of your child.

[kbutton]

This thread caught my interest because my brother-in-law was diagnosed with Asperger's a year after his father (my father-in-law) died. I'm watching from the sidelines, but the diagnosis has helped me make sense of some family dynamics and given me better insight towards my mother-in-law. It's helped my relationships with her as things that didn't make sense now make more sense.

 

One other thing not yet mentioned-many people on the spectrum have other health issues and may respond differently to meds--and it's in their best interest that doctors who treat them to know what's all going on with them. Normal doses of medication may be too high for them and bring on negative side effects. Before his Asperger's diagnosis, my BIL had one of those weird flip-out, violent responses to a medication that put him (and others) at risk of harm. He's also had a long history of gastro-intestinal problems--and doctors weren't clued into what the problem was. Apart from getting treatment and help for "Asperger's" per se, it could be helpful in the overall medical care of your child.

 

Gastro issues are common with ASD folks. There are other issues, like coordination, that can be improved if one realizes that it's not lack of interest or maturity but something that actually goes along with ASD.

[mamashell]

 

[KathyBC]

 

 

The unpretty thing is to be a teen who didn't get the supports.  Parent without regrets.  You know now and suspect now.  Listen to your gut and get the evals so you can make informed choices about areas to intervene on.  ASD is a global issue, so he needs global evals (psych, speech, OT).  Then you can have fuller information to make informed choices and then your dh will see what areas are affected that should change.

:iagree:  This.

[Lecka]

http://www.amazon.com/Big-Short-Inside-Doomsday-Machine/dp/0393338827/ref=asap_bc?ie=UTF8

 

I have just been reading this book and there in a person who finds out he has Aspergers when his 4-year-old son is diagnosed with Aspergers.  

 

He says he has some mixed feelings about it.  It comes across like his wife is interested in it for their relationship.

 

But here is what jumps out at me.  

 

Earlier in the book they are talking about him, and it is just one thing after another that is coming across like he has Aspergers (probably setting up for later in the book, maybe).  

 

But at the time, he is in his early 20s, and there is a problem that is recognized, and he looks into getting some help.

 

And the person thinks that he has bipolar disorder!  

 

I thought this guy was a very cool guy in the book, he is someone who makes a lot of money in the stock market b/c he does not follow the crowd and does his own research.  

 

But it struck me that with something there, and it left open, there was a thought of it being bipolar disorder.

 

I do not have anything against bipolar disorder or mean to put it down, it is just -- if you do not have it, you do not have it, how is that going to be helpful information?  

 

But the person in the book, as an adult, I think it comes across like -- he had to figure things out as a child and figure out why he was different, why he did things the way he did.  And he came up with an explanation for himself, and he managed.  Then as an adult he found out this new information and would have to go through the process again of putting those pieces together.

 

To me I read it and think, it might have been better to have had this information when he was younger.  That is just my take on it.

 

But it was interesting to me to come across it, in a book that I did not think was going to have anything to do with autism.  

[kbutton]

And the person thinks that he has bipolar disorder!  

 

It is my understanding that people who functioned well enough to make it to adulthood without a diagnosis were often misdiagnosed as being bipolar. I don't know where I got that information, but I almost think it might have been in a Tony Attwood book.

 

So, yes, risking incorrect diagnosis later or the risking the development of other severe issues like anxiety or depression down the road because of a lack of coping and life skills are reasonable things to worry about with a lack of diagnosis or a late diagnosis.

[Tanaqui]

Several conditions seem to cluster together - you not only tend to see them in the same people, but you also tend to see them in the same families, so that if a family is prone to one, there's no big surprise that they're prone to the others.

 

IIRC, that list includes (but is not limited to) autism, ADD/ADHD,  bipolar, major depressive disorder, and schizophrenia, and I think  OCD, but don't quote me on that last one. Oh, and also high intelligence, which annoys me. (Not because I think it's a bad thing that the same genes that are linked to autism are linked to high intelligence, it's just that Temple Grandin has been saying that for years in the most obnoxious, ablist way possible and I always thought she was a bit of a pain, so I hate for her to be proven right just on general principles.)

 

So, yeah, in addition to what I just said, it's not terribly uncommon for people to have trouble pinpointing the exact right diagnosis here. Lots of people are misdiagnosed as bipolar or ADHD or something before receiving an autism diagnosis, and I'm sure it goes the other way as well.

[Guest maeve0929]

If you are worried about therapies, get in contact with a university nearby and see if their psychology department offers therapies you can sign up for. They often do for graduate and PhD students to get practical training, and they are overseen by a Doctor in the department. They will also do testing and diagnoses. They will most likely charge you based on need and/or income if you don't have insurance that will cover these services with a private practice. A university near me has an autism studies and therapy center. Just some thoughts.