Need Feedback - 8 year old child Asperger's / OCD
My 8 year old boy, it was discovered around the age of 2 years that he was in the very least an Obsessive Compulsive Personality. I had hope it would never bloom into a disorder, but it did. Still, it remained manageable for a long time. He had a great insight into his own thinking and behavior patterns and we were able to cooperatively work through many, many obessions and compulsions together. Things began spiraling out of control after he turned 8 this past January. He had in this past year experienced every possible category mentioned in OCD guides and manuals (hand washing, repeating, counting, checking, cleaning and I'm sure more that I am not even recalling now). He is an amazing child - very abstract, creative, intelligent, sometimes quite focused. We needed help this year when my education and back ground experience were no longer a match for what was happening to him.
He began confessing to me on a daily basis - everything from "I hid a hot dog under the couch when I was four" to "I had a bad thought". The previously visble compulsions were becoming pure obsessions. At our first appointment, the doctor refused to proceed with treatment plan or even diagnosis without consult from Toronto Sick Kids Hospital. She said that what she was seeing was autism, and needed to be able to seperate the two in him. As we wait now for the last month or so, for a telepsychiatry meeting with the folks in Toronto, my son began saying things that scare me to death on a daily basis:
"My brain keeps telling me that I was born to be wild, and I should run through the forest"
"My brain keeps telling me I don't need to wear clothes"
"My brain keeps telling me that I need to run away"
"My brain keeps asking me which parent I would want to die first"
"Every time I hear the word 'girls', my brain shows me a picture of their private area"
"Every time I see something with a line or crack in it, I see a picture in my mind of a girl's private area"
"My brain keeps telling me to stare at one spot outside and never move again"
"My brain keeps telling me I don't belong here"
There do not seem to be any rituals or compulsions related to these repetative thoughts. It feels to me that the scales are tipping full force from OCD to autism. Some of the statements he makes (above) scare me more than others. As far as the private areas of girls is concerned, he has always been a guilt ridden individual, and I expect that his thoughts will be ones that will make him question his morality. This is common with him. However, when I hear things like "I don't belong here", and "I want to stare at a spot and never move again", I grow extrememly concerned that he his moving more inward - out of this world and into his own. I can only explain it as feeling like I am losing a child, even though he is still here, parts of him are missing or stuck inside.
Question: Is it possible to have high functioning Autism or Asperger's suddenly emerge and actually become worse at his age? I just assumed that if he had Asperger's or HFA, that it was something that was always there that went unnoticed. If you are the parent of a child with Asperger's or High Functioning Autism, or a grown child with either - please let me know if any of the above type of statements my son is making are familiar to you. Are they part of OCD or the other suspected diagnosis, or both? I am so afraid that he will become even catatonic based on the statement about staring. When I ask him what he means by "I don't belong here", he says that he doesn't know what it means, just that his brain keeps saying it. Same answer for the other statements when I question him.
Are these classified as delusions, (common to autism) or intrusive thoughts (common to OCD)? I just need to know that this is somewhat normal I guess. I am feeling very helpless, confused, and scared.
I should mention that we have explored the possibility of these statements coming to him through an external source (hearing voices) and this has never been the case. He says they are coming from his own brain and that they are his thoughts, and that they get stuck.
I really need some feedback here. Thanks for reading, and any response at all will be greatly appreciated.
Honestly I think that your problems go beyond the scope of the self help this board can offer. He is a child who really needs help. I would also recommend in addition to the ASD clinic at sick kids (if indeed it is the autism clinic you are seeing) that you have a referal to a peadiatric psychiatrist.
What you are discribing to me, does not sound like an autistic boy, although it can be hard to get the right feel for a situation online. A sign of autism is not hearing voices or having thoughts like this to this degree, this would be a co morbid condition frequently observed with autism.
This also to me from my experiance, does not sound like Autism. In my experiance most children with HFA or As struggle with understanding why they do things, and developing solutions / explaining themselves, especially before age 8 or 9. Athough I always think it is very important to try and get them to participate like this as much as possible.
The abstract and creative thinking also don't sound like AS or HFA. Typically abstract thinking especially at an early age is near impossible for an autistic child, and the creativity? A lack of creativity is actually a sign of AS / HFA / Autism. They push around trains, move cars, without developing stories, they line up toys, the stack things. Running dialogs and imaginary people in the stories, or even story lines that they make up with there play are usually non existant. However, some like my son will learn verbatium (word for word) a story and act it out, or parts of it out. My son knew all the thomas movies by heart, and frequently recreated them. This can be mistaken for creative or imaginative play, but you will always find a source for their ideas.
Now my son at 12 is becoming a great anaylist, he can take what he knows, and take a new piece of info, and cross reference it against everything he knows, and interpret it that way. But still, abstract and creative problem solving elude him. He can learn a math function, carry it out a 100 times, then if you change the way it is presented, he can't perform it until told what to do again! For example, multiplying numbers horizontally, 7x5=35. He knows this. You present the question like this:
And he will freak out not knowing what to do, until it is pointed out it is asking the same thing, just looks different!
Anyway, it is good you have a referal to Sick Kids, but push for a referal to the general psychiarty area too. (Unless that is where you are being refered to in the first place).
Also how is he doing socially? Does he have deep routed interests? How is his overall theory of mind? These are all things that present themselves, or key identifiers of autistic thinking.
Theory of mind:
A puppet show, Sally and Anne:
Sally has a marble, she really likes her marble and shows it to Anne. Anne likes the marble too. Sally has to go away for awhile, so to keep the marble safe, she puts it in her basket, then she leaves. Anne liked the marble a lot, and decides to take it! She takes the marble out of Sally's basket, and puts it into her own! (The child sees this happen, they know what Anne did). Now Sally comes back. Where is she going to look for the marble?
A child even from as young as 3, usually 4-5 years of age with good theory of mind will know the marble is in Annes basket, but sally does not know that ! They will tell you Sally, will look in her basket. They may also offer "but it won't be there and she will be sad".
A child without a good understanding of theory of mind will tell you "she will look in Annes basket". They can't seperate that Sallys knowledge or way of thinking will be different from their own.
Eventually, most HFA / As children will learn some theory of mind, they will learn at a later age, (say 8-11) that Sally will look in her basket, not Annes. But the point is, they will by that point probably be struggling with theory of mind in other more age appropreate areas, say understanding classmates feelings, not understanding why someone may be sad etc...
My post didn't contain his entire history, as I was focused on one issue that was frightning me at the moment:
Yes, he is creative - but it involves building items out of blocks or paper, tin foil, saran wrap tape, etc, and he repeats this until he has hundreds of the same thing made. The ideas ARE creative, yet ritualistic and repetative.
Yes, he has noted deficits in the areas of being social. He joins in, or attempts to join in play, but has learned to "pretend" that he is actually having fun, but does not have a clue why he is doing it. A strong desire to fit in will make some Asperger's children appear to be social. (E.g., when taking part in playing a game with his sisters who were pretending they owned a restaurant, he was told he was fired and cried for 3 days). Looks like play, acts like play - it's not play.
He is very literal, and we must be careful with what we say to him. That is part of the reason, I am certain, why this current compulsion invented itself.
Also, his idea of play with his one and ONLY friend is to "let's play clean my room", or "let's play we're brothers". There is no play, other than the going through these life routines, as though he is practicing life unless directed by his sisters during play, as to what he should be doing.
He has a great sense of humor, though his jokes make no sense (= creative).
He also also stims, and has notable issues with the areas of sensory. (Bright lights, sounds, texture of clothing, etc).
He is uncoordinated, clumsy and has motor difficulties.
I strongly disagree that a child with Asperger's or high functioning autism cannot be creative or abstract. Of the categories used to diagnose, not every child will fall to the extreme deficits of each category. Like every other disorder known to man, it has it extremes. No two people will be exactly the same in every single category.
He does happen to be highly intelligent, something not uncommon to Aperger's / HFA, yet some Aspies have normal to low intelligence. This does not exclude them from the diagnosis. His fascinations come and go quickly, and he will learn everything there is to know about a topic before moving on. Most of the topics he becomes fascinated with require some level of abstract thinking. I don't think this disqualifies him from having Asperger's.
Some children likewise are diagnosed with severe anxiety, or mild anxiety, severe autism, or high functioning autism. It is not a good thing to stereotype. In my line of work, I only deal with clients who have a developmental disorder (FSIQ below 70 as defined in the DSM and mandated by our ministry), however if a client comes in with an over all IQ of 76, we sure do not say that they are without developmental issues and show them the door. This is just an example of the dangers of stereotyping. It's important to be inclusive. If it wasn't for the spectrum, many of us here with Asperger's or children with Aspergers would not be recieving any help or diagnosis at all. We are lucky to be live during such a time when varying degrees of defecits can be recognized and treated.
We have a local child psychiatrist, a pediatrician, a CBT counsellor and a referral to the Hospital for Sick Kid's Pediatric and Anxiety Disorders Department. I work in the field of Psychology. He is in a good place.
I am sorry that my original post did not contain all of his information. I came looking for a specific answer to a specific accute issue and did not feel the need to give his entire history.
He does not "hear voices" he has stuck thoughts.
In another forum here, I was able to get the feedback of someone who has suffered with OCD/Autism and he reminded me that the "need to confess" is a compulsion in itself. I was more concerned with the content, than the ritual.
I am sorry if we got off on the wrong foot, as I said, sometimes things don't always translate well in writting. It was just most of the things you where talking about are not specifically AS or HFA. Although there are a lot of co morbid conditions that can occur alongside AS / HFA.
In your second post, I do see a lot of the flagship AS / HFA traits. But as I said, it is not up to me or anyone here to DX your kid or not, and I have full confidence that you will be in great hands at Sick Kids! (We have a referal into the ASD clinic at Hamiltons SickKids, but Toronto is I would think the best you can find in Canada!).
I certainly can understand why your are frightened, and looking for support!
AS kids do seem good at building! I know with my son, he could build towers even at 4 years of age that I would have been hard pressed to duplicate! We would just walk into the living room, and there would be a 4 foot leaning tower of cereal boxes and cans of soup standing proudly as witness of his "achievement". Certainly this is a type of creativity, but not one that is typical of children in that age group!
Actually, an AS or HFA child is not of lower intellegence (IQ under 70) Some of the most brilliant minds in history are suspect Aspies! Most of the people on this board I am sure have an IQ over 110, a lot of people here report IQ's above 140 -150 all the time! Sorry if this was a missunderstanding!
I did not think I was stereotyping, of course people symptoms very, and not everyone will have every symptom! Anxiety almost always goes hand in hand with AS. I suffer from it, my son suffers from it. All I was suggesting was that the symptoms that you where mentioning did not sound like they where directly related or indicative of an AS Diagnosis, and asked if he had other common traits... Again, I am not here to DX your son, and don't claim to be, but you where asking for an opinion, I understand though why you focused on the ones that are scaring you the most, that is only natural. You may find that they are related to the AS, OCD or some other condition that is co morbid with the AS. Really I don't think anyone here can know for sure, Sick Kids I am sure will provide you with some really great insight! Currently in Hamilton, we have another 7 months of waiting before I can get my son into the ASD clinic, but he is relatively not exhibiting extreamly alarming behavior, so I am sure that other kids are higher on the list because they need more help, I can appreciate that!
Sounds like he is in great hands then! I can't think of too many parents here who have that much outside support!
I am sorry if you felt like I put you on the spot, but it is kind of hard to offer suggestions though if you don't see the whole picture.
I did not think that delusions where common in AS, or a symptom of AS, usually they are a result of a co morbid condition, and not a very common one based on the people I have met here...
Although I know it is not uncommon for people with AS to talk to themselves, or carry on conversations in their head. This is not the same as hearing "voices" it is just kind of like a back and forth self talk dialog, similar to what Fred flintstone used to have with the good side of his consious and the bad side fighting over what he should do, with his listening to both and then picking a side! Maybe your sons only way of explaining this is by saying it is his "brain talking to him?"
Please, no worries - I just wanted to clarify. Actually though I wanted to make sure also that you noticed that what I said was not that people with Asperger's have low intelligence. I was saying quite the opposite.
[He does happen to be highly intelligent, something not uncommon to Aperger's / HFA].
Thanks for your opinion. You caught my attention with the "building towers" comment, as mine used to do the same with blocks that his grandfather made for him, and when there wasn't enough of those, he would continue with VHS tapes. Quite ellaborate designs and seemed very bizarre to us at the time, but the OCD was so prevelant that we missed all the cues relating to the Aspergers.
I was reading somewhere last night about what seems to be an unfortunate problem with mis-diagnosis of psychotic disorders in autistics who have delusion. Maybe it is something new coming to light. It would have to be a thought or idea that the child believes to be considered a delsusion apparently, and he realizes that they are unwanted, intrusive and silly, so I was off on that point, and thankfully so.
The overlap between these two disorders is quite a mess to sort out at times.
You're right about the waitlists. Just waiting for that "next appointment" even after you've moved from waitlist can be excrutiating. I feel like helping him is a full time job, which is causing me a great deal of difficulty going to work every day. I don't know what's going to happen with that, or what my options are, but I feel that something has to give soon.
It was nice to meet you, and I apologize too that we had mis-understood each other.
I think that the whole delusions thing, is that they are finding that some people DX'ed with a psychotic disorder actually have AS. However, this does not make it "common" in people with AS. The majority of people with an AS DX don't have psychotic tendancies. However, a small pocket of autistic people where miss labled with something else.
Some people are miss diagnosed with Bi Polar too.
There is a thread here about what anti psychotic drugs can do to a person with AS / HFA, you really should have a look, should still be on the first page started by KimJ. Really nasty stuff
I think most people with AS though, that do develop psychotic symptoms, tend to do so in their teens, or at least late childhood, not from a young age. Although, you can't "stereotype" that, as there are always exceptions to the rule!
If it helps in relation to your first question about the age of onset with AS, a lot of children around 7-8, usually going into grade 3 often fall apart, and while the signs of AS can be found when they are younger, it is at this point that the parents go looking for answers. I think it is because the acedemic pressures and the expectations for social interactions increase, often they just can't keep up. Even a very bright child with AS may have problems in school becuase of the way the system is designed, or they have no interest in many subject areas, perfering to study their own interests. Others have LD's, highly co morbid with AS / HFA. Still though, the social changes are enough to cause an increase in the problems a child faces with AS, although usually the signs can be found from around or before 3 years of age.
I think all people with AS have a little OCD in their personalities. Not all to the point they qualify for an OCD Dx, but it does seem that OCD and AS are part and parcel with eachother...
I could write more about waiting lists... But my husband needs the computer! It seems like in this province, you have to wait in a line to get on a waiting list! I suppose though, that at the end of the day the quality of care is usually pretty high that we can't complain too much. I certainly would not want to be in the US with no insurance! So, if you can survive the "wait" you are usually in good hands. Make sure you stress with the telephone interview that you are very scared for your child, I think most of these places work on a triage basis, the worst affected get in first, the rest, (like my son) are backburnered. Probably the way it should be...
Joined: Sun Feb 04, 2007 7:00 pm
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My daughter is eight years old and diagnosed with asperger, adhd and tourettes. Her psychiatrist is not yet sure if she will ad ocd to the list but she certainly is very obsessive.
I recognise what you write about your son. My daughter will also talk about her brain telling her stuff, almost as if it is not part of her, ie "my brain is so stupid it cannot understand how to do this" or "my brain is not awake yet" or "mybrain makes me act this way".
That she had an obsessive personality was what I saw first as her problem when she was little, her difficulties in socialising has become more and more obvious during the past year.
I do understand your worries and I think you have to get help for your son. He can probably feel that he is different from his friends and classmates like my daughter does and children can be so cruel. Children like ours can so easily loose their selfconfidence because of this and need all the help they can get.
Cure Neurotypicals Now!
Joined: Sun Apr 01, 2007 7:00 pm
Thanks to all of you who have replied. Things have changed so drastically here, yet again. His compulsion to confess has dissapeared almost completely and is now replaced by double and triple checking everything, (did I really put the lid on that?). He is also now starting over if the doubt becomes to great. He forgot where he had been putting sun screen on his body this morning when his Dad interupted him, so he had to do his whole body again.
His behavior therapist was over on the weekend, and is very confused about this little guy. Not only did he pass the "Anne and Sally Marble test / scenerio", he immediately grabbed the piece of paper, flipped it over and created his own little test for the therapist, which the therapist failed.
We are in fear of a mis-diagnosis, but we will continue to look at all OCD, Asperger's, Tourettes (just obtained a new tick last week), and whatever else they can come up with. Genetic testing down the road. There is so much of this (whatever this is) in my family and it is becoming quite the mystery. No one seems to fit perfectly anywhere on any spectrum.
I guess the most important thing is to have a full knowledge of his strengths and weaknesses regardless of what they call "it", and work with that. A touch of this and a touch of that could vey well end in a diagnosis of PDD-NOS. We have a lot of work ahead of us here. Like the rest of you, I would not change anything about him. There is just as much exceptionality for the positive, as for the negative. These kids are so special!
Thanks again to all of you, and I will keep this page bookmarked and update as we move along through this mysterious process.
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