Son just diagnosed with Aspergers

Post Reply New Topic

Hello everyone. My name is Theresa, and my son's name is Joey. I'm new to this forum, but have read alot of posts and found a lot of useful information. My son is 6 years old, was just diagnosed with Aspergers Spectrum disorder. We've had many frustrating days/weeks/months/years with him. We were seeing a therapist with him for about 6 months, and the Dr. simply believed that he had Oppositional Definace Disorder. Same with the pediatrician. No amount of discipline worked with my son, in fact, it simply prolonged any meltdown he was having at the time. He has had terrible troubles at school, not transitioning well from task to task. Refusing to do things he was asked to do. His handwriting is horrible, and working with him on 1 page of homework would take at least 45 minutes of struggles back and forth. He tells me a lot of times that he shouldn't have been born, he hates me, he hates his little brother etc.... All of it breaks my heart, because I don't know where he gets those feelings from.

My husband and I came up with the idea on our own, that he might have Aspergers. It took us months to get an appointment to get him seen and tested, but we finally were able to get all that done, and he is now diagnosed with Aspergers.

My issues with him lately are his terrible fear of germs. Within the past month, he has developed a horrible fear of germs, and dirty things and is constantly saying he has to wash his hands. He's always asking people if their hands are clean, even asking guests in our house if they washed their hands after they went to the bathroom. He often refuses to go outside, and I have to struggle to get him to step foot out the door. He sees the "outside" as dirty. I play games with him, telling him that I can spot germs and I will check his hands for him, and if I find one I'll put it in a jar, and it'll be our pet LOL He finds that a little funny and sometimes will forget about his fears. He will eventually start playing with toys outside, even going so far as picking up ants and spiders and other bugs. He likes to put them in a little net house he has and keeps them as his pets. But then something clicks in him and again, he's "dirty" and has to go inside and wash his hands, and won't come back out.

He even woke up in the middle of the night freaking out that his hands were dirty, because when we were outside, he picked up my cell phone off the ground, and the ground is dirty, it got my phone dirty, and his hands were dirty, and he never washed his hands (even though he took a full bath after we came in the house for the night). I mean, he was in a full out rage, screaming, kicking, crying, couln't catch his breath. It took my husband and I close to an hour to calm him down enough to go back to bed.

Again this morning he woke up, asking me if my hands were washed this morning. I get so frustrated, because I'm honestly sick of hearing him talk like this. He also doesn't ask me just one time, but dozens of times throughout the day. It's not enough that I have to struggle with every other little thing with him, but now I have this to worry about. It's like when he "thinks" about the germs, he freaks out. But when he's just going along with the program he's ok for a while, until he remembers the chance something can be dirty.

Has anyone else had issues with their Asperger child and the fear of germs? What did you do for it? Have you seen any improvements?

I am also located in Chicago, and would appreciate any suggestions of where to go to get him some therapies etc. He was literally diagnosed last week, and we haven't even thought about where to get him some of the help that he needs.

When something causes me to feel anxiety, typically I learn everything there is to know about it--I turn it into a special interest, basically. If I know exactly how much of a threat it is and what steps can reasonably be taken to minimize the chance of it harming me, it no longer causes me as much anxiety.

Have you tried educating him about microbes? Not all "germs" are harmful; in fact, most of the viruses and bacteria out there aren't human pathogens at all and many of the bacteria that colonize the human body are actually considered to be helpful. The normal bacterial inhabitants of the intestines are what help protect us from dangerous pathogens, for example. There may be books out there appropriate for your son's age that will help him learn about the different kinds of germs so he knows what is reasonable to fear and what isn't. Maybe you can help him find good and age-appropriate information on the internet. Perhaps you could turn it into a household hygiene project--for example, you could get him to help you make sure your kitchen is set up properly to minimize the risk of foodborne illnesses like Salmonella when preparing raw chicken.

But please don't become frustrated with his fear--it won't help him, but it could damage his trust in you.

+1

Explaining about good v&b and bad v&b can help. Fear often comes from things that are unknown.

Also, it may be good to explain about how some dirt can be good by helping to boost the bodys defences but only if he can understand this.

Hi!

We haven't had issues with germs, quite the opposit. We have had issues with bugs. There was a time that any kind of flying insect would send my son into a prolonged meltdown. He was horribly afraid of bees and would mistake any kind of flying insect or even a small piece of falling debris, like a leaf, for a bee. Lately he's been a bit better. He knows that a bee sting can hurt but that if you don't scare it most bees won't sting you. He's not allergic so there is no reason for him to be as afraid as he's been. He has gotten a bit better.

He used to also freak out about any kind of drops of water on him, and now does not. He can even take showers.

I can't get my eldest son to keep his hands or clothes clean. He has a strong preference to be dirty and it's causing problems at school, and anywhere else we go. Maybe he'll get better like he did about those other things.

I've got two Aspies and an enigma child who was diagnosed as having PDD-NOS but recent testing didn't show he's in the spectrum at all. He didn't speak until he was 5/6.

Kiley

Agree, he should learn from a source he trusts to be accurate that not all germs are bad and that in fact the human immune system needs some germs in order for the body to function properly and to protect itself from other germs.

Agreed with the education about germs. I had phobias as a child but they were completely out-there (aliens, ghosts) or from a really bad experience (dogs) so it's not really the same.

But expect to be asked the same things over and over. If it's not germs, it's going to be something else-- but preferably not a phobia/fear. :X

EDIT: Actually this sounds like it might be a sensory problem with being dirty that manifested in a fear (another example would be touch hurting, so a huge fear of being touched. or issues with loud noises, so fearing balloons or anything that causes loud noises.) Just an idea.

Hi Theresa - Welcome! I'm new here as well (my daughter Lindsey is 8 today!) and is as of yet without an "official" diagnosis as of yet (PDD at age 4, but not an official Asperger's Dx as of yet).
I don't have much advice - the issue here is bugs as well. I do LOVE the suggestion of looking at things factually - I tell her all the time that the common house fly will nt harm her, but it might be different if she can research it herself (just wondering how to get around the whole houseflies carry germs issues......if it's not one thing it's another!).
Anyway, I just wanted to say welcome - I've been hanging out here for about a week and LOVE all the great advice and help that everyone offers!

I sent you a PM with a list of contacts in the Chicago area.

I'm also in the Chicago area. I have a very good therapist who works with children and is very knowledgeable when it comes to AS. He runs the outpatient program for an entire behavioral hospital. He can also recommend a good psychiatrist. Let me know if you're interested.

This is because your son is not trying to be bad. He has an inability to cope with the demands placed on him, and punishment does not work because there is no point in punishing a cat for not acting like a dog.



Many people with AS have coordination issues. I'd also have him tested for learning disabilities as they are quite common among those with AS.




This is likely because he has low self esteem as he realizes he is different from everyone else and everyone is pressuring him to act in a way he can't act and be a person he can't be. You would probably be very frustrated too if it was implied to you that the very nature of your being was wrong.



It sounds to me as if your son has developed OCD. You need to have him evaluated for this by someone who specializes in OCD. You should also read about it from reputable sources.

Your son sounds a lot like me when I was that age.

Thank you everyone for your suggestions. Gramirez, I would love the name of that therapist. As far as educating my son on the germs, I really think it's a great idea, but I fear that it might backfire, and make him even more scared of them. Right now, he just fears that he is "dirty". I can't get him to touch things that have fallen on the floor, because the floor is dirty, so now that object is dirty. He will ask me if the floor is clean, and only if I tell him yes a bunch of times, will he pick it up. Someone suggested that this might be a sensory issue, and I think that might be the case. He has always hated his hands being "sticky", or touching food. He's never ever been one of those kids that can eat spaghetti with their hands and get it all over their face. He has had to have clean hands since he was a baby LOL My 2 year old son, on the other hand, will eat with his face in a bowl and doesn't care where the food lands on his body, quite the opposite from Joey.

I do intend on finding some information and seeing if reading that with him will help him understand that dirt and germs aren't so bad. But for now, I'm just plugging along trying not to let it get to me, and trying to keep him calm when a bad situation arises. Thank you again, and I really love how caring and supportive these forums are. I feel I have found a great place to get to know others in the same boat as I am

You might want to try educating him about the germs and microbes that we rely on. We would die without the ones that help us digest our foods. Even the germs and microbes that are harmful to humans play some role in the ecology of the world.

I am highly skeptical that it is a sensory issue, but we should not assume either way at this point. I would have him evaluated for OCD.

If it is OCD, no amount of explaining about germs is going to help. He would need OCD specific therapies such as CBT and perhaps medication.

Here is a question. Does he require you say yes a particular number of times?

Why do you doubt this is a sensory issue? I see nothing indicative that it isn't.

I sent you a Personal Message containing the info.

Because I'm very familiar with OCD and the nature of his behavior concerning this is highly suggestive of OCD. I will elaborate if you want me to.

OCD with germophobia does involve a sensory component but it's a bit different than the types of sensory issues which make things too loud, or itchy, physically painful, or pleasurable.

This should be understood to be a simplification of the actual process behind OCD as it is likely a little more complex and involves other areas of the brain....

With OCD, there is a miscommunication between the basal ganglia, which is in the center of the brain, and the frontal lobes, which process information to make logical sense of it. The basal ganglia is essentially an uninhibited "potty mouth". It's constantly spewing out worries and movement commands. There is a structure around the basal ganglia, or comprises the outer portion of this which filters most of this out. Damage of this structure usually results in involuntary movements and emotional issues depending on which portion is damaged.

With OCD, worrisome thoughts do not get filter out very well. For example, the idea that the stove was left on makes it to the frontal lobes for the person to realize. The person interprets this as a compulsion to check the stove. The person checks the stove. The frontal lobe sends back a message "Stove checked. It's off". But the there are white matter abnormalities in the circuitry that connects the frontal lobe to the basal ganglia. Tje message does not get back to the basal ganglia. The basal ganglia requests the action be performed again. The person again has a compulsion to check the stove. This continues. Essentially the basal ganglia does not get the message that the stove was checked and thinks something is wrong so a panick response is produced in an attempt to get the person to check the stove. The basal ganglia and other parts of the brain are screaming "Check the stove, check the stove CHECK THE STOVE OR THE HOUSE IS GOING TO BURN DOWN AND IT WILL BE YOUR FAULT.....and your mother will die!! !! !!" and the frontal lobe is screaming "But I did, it's off it's off it's off!! !!"

The basal ganglia is part of the primitive system that is integral to our survival. It has control over subconscious parts of the brain. The frontal lobe is just kind of along for the ride. It can only consciously acknowledge something and invent new ways to communicate with more primitive parts of the brain. Part of it's arsenal to get you to do what it wants you to do is, it has the ability to trigger vague sensations which aren't actually physical but border on hallucinatory in that they are a little more than a thought. They are best described as phantom sensations, or phantom perceptions. With OCD based germophobia, it is the same perception a normal person gets when they drop a cookie on the ground, think it might be ok to eat, go to eat it, and then think twice about eating it because they get an uneasy feeling that it's dirty. It's the same sensation they get when shake someone's hand and realized that person had just had their hand in their pants.

With OCD with germophobia, the person with OCD gets a junk message telling them something is dirty. It's irrelevant whether or not it is actually dirty because any insistence that it isn't by the frontal lobe does not get to the basal ganglia. A panic process is initiated and a phantom sensation is generated to try to prompt the person that it is dirty and to take the proper measures. A person with OCD who needs to wash their hands will often feel as if they have just touched someone or something dirty, and this sensation will persist as a vague, phantom feeling on their hand until they find a way to convince the brain they have taken the proper measures to deal with it.

So in that sense there is a sensory component to OCD.



For this reason, people with OCD usually "invent" (surprisingly similar, if not identical) rituals to override the basal ganglia.