Aspergers or Anxiety/Depression or Something Else

[joannqn]

I've posted frustrations about my son a few times in the past (though not on this sub-forum) and have had a couple people say to me, "Sounds just like my asperger's child." Some of his behavior reminds me of a friend's now adult asperger's son when I knew him years ago. Some of what he says reminds me of another friend's asperger's daughter. In fact, I called her after a recent blow up, and she told me that she said the same things to her daughter before and her daughter has said the same things to her. She encouraged me to consider diagnosis since my son wants to know "what's wrong with [him]."

 

So, I made the appointment with our pediatrician, whom we love. He's been the greatest doctor for us for 11 years, and I've only had one complaint in all those years. Interestingly, it was in a similar area...I wanted my daughter to get help for sensory integration issues but he tried to reason with her (she was 7) about the importance of washing her hair and face instead. The issue was that she was terrified of getting even a drop of water on her face...in addition to issues with brushing her hair and some other fears. She's getting better but she still has issues at the age of 11. With therapy, maybe she wouldn't still be crying during swimming lessons despite the fact that the teacher thinks she has swim team potential if she could just get over the fear. I didn't push it; I'm sure if I had I could have gotten the referral.

 

Anyway, he doesn't think my son has aspergers based on the 4-5 kids in his practice that has it (aren't they all different? And I agree that it is probably mild), though he admits he isn't an expert and is willing to refer. He talked to my son about everyone being different and everyone having their issues and difficulties and how it is important to obey your parents, treat people respectfully and control your temper. He thinks it's just anxiety/depression and offered us Zoloft. I'm willing to try the Zoloft because DS is exhibiting some depression symptoms (ie. being down often, not liking himself, and saying he should just kill himself), and DS wants to try it, if it might make him feel better. While he is often in a good mood, he's pretty unhappy about himself.

 

So, he would normally refer to the developmental pediatrician in Tacoma (where we used to live and where his practice is) but I refuse to set foot in the same room with THAT guy again. He and his partner are the only ones in town. Doctor said child psychologists can also diagnose and said he'll give me a referral to whomever I want to see; I just have to find one locally. A friend gave me the name of "the best, most helpful person we saw" but she's a psychiatrist, my doctor can't refer to her because he doesn't have privileges at the hospital where she works, our insurance (DSHS) won't let us see anyone outside our own county, and we aren't allowed to bypass insurance and pay out of pocket.

 

UGH! So, what now? I don't want to randomly select someone out of the phone book or internet but that's basically what I'd be doing. I don't want to trust my son's mental health and our family's well-being to just any random doctor; they can do some major damage. Plus, the fact that we homeschool, breastfeed for 2 years, don't vaccinate, etc. can really hurt us if we run into someone who's against all that.

 

I don't know what to do. We just moved to this town 3 months ago and don't know anyone here. And, no, I won't go to the developmental ped for any reason. He's an arrogant, egotistical, SOB who dx'd this same son with severe learning delays in multiple areas and family circumstances...basically our marital problems that my son was unaware of were causing him to be severely learning delayed, unable to communicate, and have rage attacks out of frustration because of his inability to communicate. Oh, and he wanted me to ignore my son and pay attention to him rather than prevent my son from injuring and biting my daughter, knowing that my son bit so hard as to draw blood. (Turns out his learning delays were caused by severe malnutrition from an undiagnosed lactose intolerance; we took dairy out of his diet and he went from barely putting two words together to speaking in complete paragraphs in 3 months and was caught up in 2 years and is now ahead in every subject except reading comprehension (can tell details but not see the picture picture/meaning/draw inferences) and social issues. Family circumstances my butt.

 

Whew! Sorry for the rant.

[Guest]

First of all, many many :grouphug: to you. It's astonishing and quite depressing to see that such misunderstanding and lack of awareness about the issues of kids on the spectrum still predominating in the medical profession. Our pediatrician, though he noted dd's "flat affect" and no intonation in her voice, never considered Asperger's or NLD (she carries both diagnoses).

 

What I would suggest is that you make every effort, financial, physical, organizational, and otherwise, to see a neuropsychologist and get a full evaluation of your son. We have done OT, VT, social skills groups, had a shorter diagnostic session with an autism spectrum psychologist; and while all these addressed bits and pieces of the issues, nothing came together in one packet, and I never felt that anyone truly "got" my dd, until we went to the neuropsych. I'd really look around; look in Seattle and Bellingham -- lots of university people, tech industry, and potentially lots of Aspies, so possibly you will find more to investigate in those areas. It's worth the travel, truly.

 

The evaluation took eleven hours of testing over several days, plus five or six hours of consultation and discussion with me, plus the filling out of enormous amounts of questionnaires and developmental history. We then had a two-hour post-evaluation session in which she explained every single piece of information to me, gave me a huge packet of papers going through all the tests and results, offering suggestions for working with dd at school and at home, suggested possible directions to go for therapies, etc. It has been worth its cost many, many times over (most insurance companies won't cover this type of testing). I felt, for the first time, that I had a map and a guilde -- whereas before I had felt I was in one the old maps where you get to the edge and it's all the Unknown, full of sea monsters and dangers and maybe even the edge of the world. I also had names of people she thought dd would get along with in case I ever wanted to consult a psychologist, a psychiatrist, etc. She also gave me referrals for me, for those times when it gets overwhelming.

 

As your son is approaching adolescence, I hate to tell you, but things are going to get harder for both of you for a few years. If he is an Aspie, or even if he isn't, he clearly has some differences which are going to loom larger once kids hit the middle school Great Age of Conformity and treat anyone different like a leper. Hormones are going to come into play; often anxiety, depression, and acting out can become worse for a couple of years in the early teens. You are really wise to begin looking for some kind of comprehensive help right now, so you can be prepared, both of you, for adolescence. It will also help a lot with teaching him, giving you ideas for how to best work with him, how to address any potential learning issues, etc.

 

Do some research; get some names from your pediatrician, from other people you know who may have used such a service. You should be able to email or talk on the phone with people before you meet them or take your son in, get a sense of whether or not you feel comfortable with this person, know what kinds of tests they use, know what they experience is with kids on the spectrum. Here's the website of the neuropsych we used in case you want a look: http://www.boswellneuro.com

 

One caveat: our neuropsych, wonderful as she was, was also very skeptical (although polite) about homeschooling. The only person I've run into who was pro-homeschooling was the psychologist who specialized in autistic spectrum disorders. She knew how miserable kids were in school.

 

I didn't feel we had quite as good an evaluation from her -- it was MUCH shorter, didn't give me nearly as much information as the neuropsych did -- but this may also be a place to begin for you. The woman who first saw dd has written a book: Quirky Yes, Hopeless No, that you might want to check out of your library and scan through. The author's name is Cynthia Norall.

[joannqn]

Thanks for your reply. I've actually been reading that book and plan on buying my own copy because those 85 sections in the back would be so helpful for giving me structure on how to help him with his issues.

 

We've been working on eye contact since he was 2 because with articulation issues, he needed to watch our mouth so he could see how to make the same sounds. When we tell him to look at us, he will but he looks away often. He rarely looks at anyone when he's talking to them. He regularly walks into the room and launches into a 10 minute monologue about the finer details of Jupiter's moons while I completely and totally ignore him. He never notices that I'm not listening until I finally get tired of trying to tune him out and ask him who he's talking to.

 

Socially, he does best when he can benefit from his sister's social skills and play with whomever she plays with. His only friends, until very recently, were her friends. He has a friend now, a sweet boy three years older than he who shares the same Dr. Who obsession. He only plays with other kids when they engage him, but if he's engaged he usually responds ok for a while. He never engages on his own. Usually he plays along side rather than with other kids, except for his sister. He usually finds something annoying about every boy I arrange a play date with and wishes not to see that kid again, while at the same time wishing to have friends.

 

His current fascinations are math, chemistry, astronomy, and Dr. Who. In the past, he studied details of the Presidents as listed in a book we have; he was studying that book this morning, in fact.

 

He's awesome at taekwondo but really clumsy otherwise. I've never known someone who can trip and fall while standing in one place or fall off a couch while sitting on it, but he can. He falls on the stairs frequently, too.

 

He treats his 3 year old brother poorly most of the time, though he can be nice sometimes. They have never gotten along. My 3 year old was terrified of him as an infant because DS put his face 2 inches away and yelled at him in a loving sing-song voice. Now, they just bicker and fight and snatching things from each other and play tug a war while screaming at each other. At bedtime, they often argue until we've told them enough a couple of times. He gets in trouble most for being mean to his brother. His usually excuse is "but he....first" and doesn't seem to get that at 9, it is his responsibility to not stoop to the three year old's level. He's always nice to his little sister (18 month old) but not always appropriate...ie doesn't know how to handle her. His moods are starting to affect his really good relationship with his older sister.

 

He cries a lot, and cries loudly. Any other boy would be embarrassed for him if they saw him (thankfully, he's not in public school where he'd be teased horribly for how he cries). He thinks something is wrong with him. He doesn't like himself. He thinks he's bad at math when he gets a few wrong on his algebra problems; he's doing algebra! At 9! And he thinks he's bad at math! :001_huh: He's suggested killing himself three times now.

 

He's hit me in the past (a few years ago) and raised a fist at my husband once. He yells and talks back a lot. Usually he blames someone else. Recently, I asked him if one of his NEW pairs of jeans (the ones that fit right) were clean so he could wear them to church instead of the old, tight ones he had on. He went off on me, saying it was my fault he didn't have any pants to wear because I ruined his pants (I had turned one of the OLD, tight, ripped jeans into a costume three days prior). We had several outbursts about the ruined jeans over three days.

 

Yes, we're worried about what adolescence and hormones throwing a wrench into it.

[Guest]

Your son sounds very, very similar to my dd except for the anger. Some Aspie girls tend to direct that anxiety/frustration inward instead, which dd does -- textbook case.

 

Dd still does not notice if I am concentrating on something else, whether I'm on the phone, the computer, reading, anything. What is on her mind is just so all-consuming. My dh, who also is an Aspie, is still that way to some extent; he has learned a lot of coping skills, but he still has no sense of when NOT to say something, or how to time it appropriately. If it's on his mind, out it comes.

 

In contrast to your son, dh was the classic unemotional Aspie; to some extent he still is. He was sent halfway around the world to boarding school, taken out of the car in the school's drive, given his suitcase and sent of so his father could film him walking away (father was also an Aspie, can you guess?). He never turned a hair or cried, as far as he remembers.

 

Your son's interests in the sciences and math are promising for his future. Lots and lots of Aspies go into some kind of science or technology field (dh is a marine chemist; we know several physicists with Asperger's). Dd also loves physics.

 

Do you have Tony Attwood's book on Asperger's? It's one of the best books I've come across in terms of helping educate myself on all the aspects of the neurological differences.

[heart'sjoy]

One time I worked around are insurance this way.

 

I wanted ds to see a particular doctor. I had to show there was not one in network that could diagnose ds's specific need.

 

It was a grey area where several different specialties could work. I picked the specialty that wasn't in network to get to the doctor I wanted.

 

I guess I'm wondering if you could ask for a referral to a neural psychologist who specializes in ( your choice here) ASD especially asperger's and other high functions autism issues.

 

:grouphug:

I'm learning a lot with ds9 who is similar in many ways.

[RamonaQ]

I have heard great things about UW/ spectrum diagnosing. I have no names, but I wonder if there is some way to get in there (being a state institution, etc...)

[Dobela]

My guess is that it is Aspergers AND depression/anxiety. When I look back over the life of my brother (now in his late 30s) I can see that he struggled with all 3, particularly in the teen years. He was prescribed his first anti-depressant as an adult and it helped. He isn't on any anxiety medication but he does take a mood stabilizer because he also has a huge anger problem. I think that if he began them with some good counseling years ago his life would be better now. Having a name for why he was different made it easier for him to listen to us as we tried to guide him.

 

I don't have any recommendations but I do have a :grouphug: as you begin the journey thru the diagnosis. Sometimes I think that is the hardest part.

[dsmith]

After reading through your posts, I'm surprised your pediatrician would not consider that your son may have Aspergers. :confused: There are some pediatric neurologist that specialize in Aspergers, ADHD, etc. I don't know if that's a possibility for you, but that's what we use. We are in NJ but travel to NY, as we have never found a doctor we were comfortable with in NJ. When our previous neuro moved his practice to Boston, we were prepared to travel there if we didn't like the other doctors in the practice. (fortunately we do) Sometimes it's unavoidable to go out of the area to find a good doctor. FWIW, Aspergers and depression/anxiety often go hand in hand. Many of my son's anxiety issues are exacerbated by his sensory issues. He is currently on Prozac for anxiety, but it has helped alot with his sensory issues. Your son sounds very similar to mine socially. I've been reading Thinking About You, Thinking About Me by Michelle Garcia Winner. It's been very eye opening and really helped me to see where his social deficits lie. I could plug in ds's interests, substitute cousins for siblings, and we'd have the same kid.:001_smile: I'd love the 10 minute monologue. Ds can go 45 minutes while pacing. I'm surprised he hasn't worn through our carpet yet!:tongue_smilie:

 

ETA: This was a good starter book, written by one of the drs in our Neurology group:

http://www.amazon.com/gp/product/1843108119/qid=1133584723/sr=2-1/ref=pd_bbs_b_2_1?s=books&v=glance&n=283155

It deals with a range of disorders, but gave good details about each from what I remember.

Edited February 17, 2011 by dsmith

[HeidiD]

FWIW, Aspergers and depression/anxiety often go hand in hand.

 

And OCD, as well.

 

I think it's really important that aspergers kids develop an understanding of their neurological/psychological profiles, particularly as they move into young adulthood. There's a great deal of emphasis on social skills training in order to help them conform (certainly useful, to a point) but not enough on self-acceptance, and on helping them understand and manage their neurological differences. This lack of awareness, understanding and an action plan to follow when life gets out of balance can trigger (or exacerbate) anxiety and depression, with sometimes tragic results, because they often tend to view the world in a very black and white manner.

 

Regarding medication, an autism expert is the safest way to go (something we learned the hard way :tongue_smilie:).

 

If he's wanting to know "what's wrong with him" and saying he should just "kill himself", you need to act on this right away. Is there a childrens' hospital anywhere in your vicinity? That would be a good place to start.

[Laurie]

I have heard great things about UW/ spectrum diagnosing. I have no names, but I wonder if there is some way to get in there (being a state institution, etc...)

 

When I called the clinic many years ago they had a very long waiting list. But the person I talked to was able to give me the name of a child clinical psychologist in private practice.

Here's a link to the clinic and there's a number to call for resources. They may have some names of clinicians in your area.

http://depts.washington.edu/uwautism/index.php

[ktgrok]

He sounds a lot like my son, who was just diagnosed with Asperger's. Look around for a neuropyschologist.

[8filltheheart]

 

I would pay for an evaluation at least. You need to know if it is spectrum, depression or giftedness. She should be able to administer an IQ test, do a screening for Aspergers and give you some basic information to get you started in the right direction.

 

He sounds a lot like an aspie to me but I don't think that that in anyway rules out either giftedness or depression. You very well may have all three going on.

 

:iagree:

 

There are an awful lot of people labeling people as being Aspies w/o testing. I am always amazed by the number of people who tell me they know several people at work who are Aspies and are extremely successful at their careers and insist that being an Aspie is really nothing more than being quirky. Since Aspergers didn't even hit official diagnosing in the US until 1994, my suspicion is that the majority of these people are self-diagnosing themselves and others. It makes it seem as if you don't need a real diagnosis and real intervention. Our experience is completely contrary to that.

 

It isn't as simple as saying that they have these symptoms so therefore they are X. We went through the wringer trying to get an appropriate diagnosis for our ds. We were aware from infancy that there was something different but we thought it was more along the lines of severe ADHD. (Ds was born in 92, so keep in mind that Aspergers wasn't even well recognized when he was little). We moved to a new city and our new pediatrician told us that he thought ds was either a high functioning autistic or an Aspie. He recognized the symptoms when I had him with me for a younger sibling's shots and ds went ballistic. Our ped has an autistic dd; for him the resemblances were easy to identify.

 

Fast forward to age 12. We moved and ds could not cope. OCD behaviors started to take over his life. We sought psychiatric help at that pt and it became a treadmill of misdiagnoses. We told every psy we saw that we thought he was an Aspie. Every single one insisted that he wasn't. We couldn't even get any of them to agree to full battery testing. They based their diagnoses on observing him in their offices and parental surveys. We were told he was OCD, ODD, ADD, bipolar, depressed, CD......it was awful. Meanwhile, his behavior completely disintegrated. (if you search for my posts on this forum from 2008, you will see that we ultimately had to have him committed to a psy hospital and eventually we had to have him removed from our home for several months b/c he attacked me while I was holding his 2 yr old sister)

 

After several months of anger management sessions, a therapist finally told me that the classes weren't helping. (I literally started laughing. Yeah, I already knew that!!) He is the one that finally said that he thought ds had Aspergers. Finally someone helped us arrange for full battery testing. The testing revealed what we had been trying to tell therapists and psys for over 4 yrs. Yes, he is definitely an Aspie.

 

I have a lot of anger over what we went through b/c he missed proper treatment at a key pt in his life. Our ds is not like those people I keep being told about as having no problems functioning in high level jobs. He is intelligent, but his behavior at times is on par with a toddler (temper-tantruming when things don't go exactly his way), completely unable to deal with small changes (like having a several hour tantrum when his final exam was delayed due snow), and not being able to process the big picture. He hyper focuses on the literal, in front of him, exactness.

 

Appropriate training in coping skills needs to be started younger. Academic ability isn't the whole picture. My inability to recognize that issue has ultimately hampered his current pt in his life. He has a great college prep education w/o the ability to cope with college. :( We have a smart adult with many behaviors that are more immature than our 5 yod. Trying to sort out his future at this pt in his life is honestly a nightmare at times. (different nightmare than his mid-teens where he was violently out of control.......this is the frightening aspect of wondering if he will ever be able to live independently)

 

All that is to say.......I wish someone had encouraged us to forget what all the professionals told us and had gone to a different city to get independent testing/evaluations done so that appropriate skill training could have been done. We cannot get those yrs back and that hurts him.

Edited February 18, 2011 by 8FillTheHeart

[joannqn]

You need to see someone who knows what they are doing but something confused me. You said that you are not allowed to pay out of pocket to see the psychiatrist. Who won't allow that?

 

He's on medicaid. I asked them what was stopping me from calling back and saying he had no insurance, and she (the appointment setter person) said they when they put the patient in the system they cross check and would find it.

 

8FilltheHeart - I have two friends with older aspies. They aren't as bad as your son and my son isn't as bad as theirs. I only suggest aspie because of the similarities I've seen...with the eye contact, social awkwardness, emotional outbursts, blaming everyone else, etc...and then only mildly. He just wants to know "what's wrong with [him]". He knows something isn't right and it bothers him. I'm sorry you've had to go through such difficulty with your son.

 

Someone else pm'd me about the possibility of giftedness coming into play and that's a possibility too. I just don't know. I just know he's unhappy, makes his brother unhappy, and has me worried for his future.

 

BTW, he's had 3 doses of Zoloft and he hasn't had a single outburst since the first one. He's been nice to his brother for three straight days with not a single altercation between them. It's weird because his new nice voice is genuine nice not the fake, high-pitched, sing-songy voice usually used with newborns. His face looks calm and peaceful and the bags under his eyes are gone. It's a noticeable difference in his appearance. Maybe the doctor was right.

[Dobela]

:iagree:

 

There are an awful lot of people labeling people as being Aspies w/o testing. I am always amazed by the number of people who tell me they know several people at work who are Aspies and are extremely successful at their careers and insist that being an Aspie is really nothing more than being quirky. Since Aspergers didn't even hit official diagnosing in the US until 1994, my suspicion is that the majority of these people are self-diagnosing themselves and others. It makes it seem as if you don't need a real diagnosis and real intervention. Our experience is completely contrary to that.

 

It isn't as simple as saying that they have these symptoms so therefore they are X. We went through the wringer trying to get an appropriate diagnosis for our ds. We were aware from infancy that there was something different but we thought it was more along the lines of severe ADHD. (Ds was born in 92, so keep in mind that Aspergers wasn't even well recognized when he was little). We moved to a new city and our new pediatrician told us that he thought ds was either a high functioning autistic or an Aspie. He recognized the symptoms when I had him with me for a younger sibling's shots and ds went ballistic. Our ped has an autistic dd; for him the resemblances were easy to identify.

 

Fast forward to age 12. We moved and ds could not cope. OCD behaviors started to take over his life. We sought psychiatric help at that pt and it became a treadmill of misdiagnoses. We told every psy we saw that we thought he was an Aspie. Every single one insisted that he wasn't. We couldn't even get any of them to agree to full battery testing. They based their diagnoses on observing him in their offices and parental surveys. We were told he was OCD, ODD, ADD, bipolar, depressed, CD......it was awful. Meanwhile, his behavior completely disintegrated. (if you search for my posts on this forum from 2008, you will see that we ultimately had to have him committed to a psy hospital and eventually we had to have him removed from our home for several months b/c he attacked me while I was holding his 2 yr old sister)

 

After several months of anger management sessions, a therapist finally told me that the classes weren't helping. (I literally started laughing. Yeah, I already knew that!!) He is the one that finally said that he thought ds had Aspergers. Finally someone helped us arrange for full battery testing. The testing revealed what we had been trying to tell therapists and psys for over 4 yrs. Yes, he is definitely an Aspie.

 

I have a lot of anger over what we went through b/c he missed proper treatment at a key pt in his life. Our ds is not like those people I keep being told about as having no problems functioning in high level jobs. He is intelligent, but his behavior at times is on par with a toddler (temper-tantruming when things don't go exactly his way), completely unable to deal with small changes (like having a several hour tantrum when his final exam was delayed due snow), and not being able to process the big picture. He hyper focuses on the literal, in front of him, exactness.

 

Appropriate training in coping skills needs to be started younger. Academic ability isn't the whole picture. My inability to recognize that issue has ultimately hampered his current pt in his life. He has a great college prep education w/o the ability to cope with college. :( We have a smart adult with many behaviors that are more immature than our 5 yod. Trying to sort out his future at this pt in his life is honestly a nightmare at times. (different nightmare than his mid-teens where he was violently out of control.......this is the frightening aspect of wondering if he will ever be able to live independently)

 

All that is to say.......I wish someone had encouraged us to forget what all the professionals told us and had gone to a different city to get independent testing/evaluations done so that appropriate skill training could have been done. We cannot get those yrs back and that hurts him.

:grouphug::grouphug: I can understand, at least some. My brother was born in 1972, and started school before the federal special ed laws were even a requirement. He wasn't diagnosed with Aspergers/Autism until 2006. Would early intervention have helped? Yes, some. Maybe. He actually received early intevention in MO before he was 5 yrs old. But they didn't kno what to call him or do beyond speech therapy. He has an above average IQ yet utilizes most of it on the level of a 5 year old. My mom has lots of anger over my brother's life, so much so thta it consummes her life in some ways. He isn't able to live independently and is on disability now despite college and specialized job training thru rehab services. He is on medications to help with the depression and anger issues. He volunteers several days a week at places that interest him. He can't hold a job due to anger issues and inability to follow directions.

 

I was working in early intervention in 1996, when your son would have been 4. Not many were 'cutting edge' and aware of Aspergers. Chances are that if he was functioning well enough then and scored high enough on evals that he wouldn't have received any help anyway.

[Misty]

I have mentioned to you in the past that your son may have Asperger's. I'm glad to see you are taking these steps. I would definitely do everything possible to get the referal, even if it means going to any old psychologist.

 

By the way, have you ever considered that he is more mildly affected because you do not vaccinate? He might have been much worse off if you had vaccinated.. Food for thought!:001_smile:

[Alessandra]

I was about to post that I would not want to take a psychiatric medication prescribed by a pediatrician, but then I saw it was helping...

 

Oh, I hope there is a way to find a good professional to help your ds. The financial situation sounds so difficult. No advice, but I will be thinking of you

 

Not related to JoAnn's comments (at all), but I did want to say this post is so sensible!

 

:iagree:

There are an awful lot of people labeling people as being Aspies w/o testing. I am always amazed by the number of people who tell me they know several people at work who are Aspies and are extremely successful at their careers and insist that being an Aspie is really nothing more than being quirky. Since Aspergers didn't even hit official diagnosing in the US until 1994, my suspicion is that the majority of these people are self-diagnosing themselves and others. It makes it seem as if you don't need a real diagnosis and real intervention. Our experience is completely contrary to that.