Monday, July 28, 2014
I can't believe that summer is almost over and school will start soon. I sure will all the fun that we have had over the summer, I am kind of glad that Griffin didn't go to camp ...that is my selfish self since we have laughed and played so much.
My meditation is still continuing and it has helped me transform into a much nicer and much more compassion/understanding person. I guess that you could say that I am proud of the happy positive person that I have become.
Saturday, July 19, 2014
Saturday, June 07, 2014
I just put this together, I need to make a more current one but have yet to print out the pics.
Hopefully you can see the details in this. Sadly the only thing missing is a pic of my mom which I couldn't locate but I will be sure that she is in the next one. I will be doing it soon.
This one has my dad, Abby, our kitty Pisgah from when we lived in Alaska, my brother (God rest his soul), and my parent's dog Jade ( God rest her soul). A couple of me and one of the ex husband, Spiro's (the love of my life who was present when Griffin was born). He and I lost touch..he is in Greece now.
Griffin spilled milk on my/this brand new phone and nearly ruined it. I got upset because I cannot afford to replace it and caused him anxiety which he gets so very easily these days....so I am taking him swimming so he/we can decompress.
We are both looking forward to summer break. Busy schedule ahead.
Monday, May 19, 2014
Saturday, May 03, 2014
Yesterday I finally found the courage to take Abby our retired service dog to the shelter to be euthanized because she has been in a lot of pain for quite some time. She had hip dysplasia or arthritis in her hips because it was difficult for her to walk and to get up and down, especially in the car.
I cried all day but when I told Griffin he took it very well saying, "I knew today was the day that Abby died!" I didn't tell him that I had her put to sleep only that she died.....I guess that when he is older I will explain it to him because eventually he will read this blog and besides, he deserves to know the truth.
Abby was about 2 years old when we adopted her around 10 years ago, Griffin was only 2 years old himself.
I got her because I had noticed that when my friend
Nina`s dog was around that he didn`t have self injurous behaviors like banging his head so then I went to the shelter in
Anchorage and discovered our angel. She was named
Valentine but I wanted a name that was easier for
Griffin to pronounce. Since then, for 9 years,
Abby had litterally gone everywhere with us....on trains, buses, in the cabin of the airplanes, cars, and always accompianed us in the stores. She was so loved and a big part of our family bit
I just couldn`t let her suffer anymore. I felt so selfish keeping her alive.
Her suffering has ended, she lives on in a better place, and forever in our hearts and memories with great fondness.
We also got a new cat from the shelter named" Link". He is a 5year old orange tabby and very affectionate. Griffin loved him immediately! I don't know how to add a second photo since I am doing this from my phone but will add one in the next post.
Dot is tolerating Link and Link is really cool about Dot, I think they will be buddies eventually.
Tuesday, April 29, 2014
|`I couldn't get this picture rotated because it was sent like this and couldn't be changed.|
But here is Griffin next to one of his all time favorite mascots.
Thursday, April 24, 2014
Griffin wanted to dress up as the late Colonel Sanders of Kentucky Fried Chicken because one of his most favorite things to do is to draw, search for online, and collect advertising icons from days past.
So last night he thought that he would take it one step further and look like the real thing by putting white paint in his hair.
We are still doing intensive in home bit we don't really need it anymore because things are going so well. His behavior is stellar and he is sleeping much better as long as I don't put him to bed too early. He still goes to school late but the teachers and I have that all worked out.
Monday, April 14, 2014
Last weekend Griffin had a sleep study conducted and it was miserable! He patiently allowed the technician to place all the electrodes all over his head and body but he was so uncomfortable that he couldn't sleep all night. On top of that he was scared because he was in a strange place and they wouldn't allow me to sleep next to him.
By the time we got to sleep in the wee hours of the morning the tech came and woke us up at 5:00 a.m. Griffin took a shower to get the goop off then went back to sleep, I wasn't able. I got him up at 10:00 for breakfast he fell asleep on the way home then once home, we both fell asleep until 2:00 in the afternoon.
Not only was that night miserable but it took us several days to catch up on our sleep.
Saturday, March 29, 2014
Friday, March 21, 2014
It Is My Goal As Griffin's Only Parent In His Life To Teach HIm To Love HImself For Exactly Who He Is.
Friday, February 28, 2014
He has been having a difficult time with transitioning from going to school late these past few months because actually he prefers to go to school early and sleep in school but not his teachers. They prefer that he stay home and sleep it off then come in but his intensive in home worker says that the teachers can't say that so....I don't know? I will have to check into it. I don't know what is best for him. I really don't think that sleeping in school is a good idea, it doesn't send a good message yet going late doesn't either. But he goes back to the doctor Monday and I am going to recommend that he goes to have a sleep study because I think that he has sleep apnea.....I really think that is what is waking him up at night especially since he is a mouth breather. He has already had his tonsils and adenoids out but he still snores.
Since we reduced the Risperdal his behavior has become a bit more aggressive but not too bad, not as though it is intolerable. He just screams a lot....even at school and usually at the other autistic child. He just gets frustrated with his peers because they talk to him too much.I really get the strong feeling that one certain teacher doesn't care for him, doesn't try with him, and certainly has no clue about autism because for one thing she walked out on an IEP meeting saying that Griffin just didn't apply himself......AAARRGGG!!! She sent home homework that was far too difficult for him after I told her so, she ignored my requests for a parent/teacher conference etc..Now Griffin is saying that he is afraid to go to her classroom because she won't listen to him and that she doesn't understand him. When I ask about it, nobody wants to address the issue.
Griffin and I don't like to talk very much or answer many questions, we like our space and quiet time. A lot of people take it personally but that is usually because they aren't autistic and just don't understand that way of thinking so we have to understand them and realize that they mean well ,most of the time even when they hurt our feelings.....we have to learn to not take it personally ourselves to maintain some dignity and self-esteem.
We have to be proud of our accomplishments and not expect others to give us kudos and atta-boys, for having done something that we are proud of because that should come from within...not even from a therapist or doctor or friend. Just a sense of accomplishment, joy, pride, and rejuvenation of the spirit that I've done something once again or something new that makes you feel alive, stimulates the intellect which makes me happier than all the money in the world (I know because I've had plenty of money before to do with what I pleased), Feeling talented and appreciated is like the highest compliment that anyone could pay me, then to tell me that I can write about any three subjects that I want to???? How flattering is that? I am so excited to write for Answers.com/Psychology I don't have that article completed yet, not for a week or so but it will be very interesting I guarantee that it will be about something you have probably never heard of yet it is quite common...all around you. Later I will be writing about autism as well after I write some articles about psychology/mental disorders which really intrigue me. But of course autism is what I know the most about, have done the most research on, had the most experience with, and that is where my heart lies.
My last article was about anxiety and here is the link for it: Fight or Flight Response: Anxiety
I am going to have to write to the support staff because part of it is illegible so please bear with me, and read it anyhow because it is only a small part. I would really appreciate your feedback.
Sunday, February 23, 2014
Griffin came up with the title of the post. Isn't it great?
Griffin and I are finally sleeping!!!! I told the doctor what was working as far as the medications go, and she finally agreed with me that he could tolerate them and if that is what worked to get him to sleep through the night and to get up on time for the bus then go for it. Now he is not sleeping in class either so that is wonderful.
Not much else is going on except that I have been writing a lot more, I submitted my second article on anxiety to Answers.com. It's at: : http://depression.answers.com/anxiety/fight-or-flight-response-anxiety if you just click on the link it should take you straight there. So far nobody has left any comments which is a bummer! Writers always want feedback on the opinions of their work, after all the work is being published for the public and for their information/education....why not let us know how we are doing?
Everything at home is copacetic because Griffin and I are getting along just great, there's no worries and I am as happy as a clam doing what I do at home alone only going out when I need to or desire to, I don't go out and do things just because someone recommended it and put pressure on me. I have Aspie friends now who understand me and talking to them for a short while is all I need for company......other than Griffin of course.
Some people still won't believe that I have Asperger's and still believe that I am bipolar but that is not my problem. If I am to be judged by a neurotypical who doesn't even try to understand me then it is their loss not mine. I am going to live my life as I see fit without unsolicited advice on how to raise my child in which they do not understand either and Griffin and I will live happily ever after.
I don't appreciate being lied to and treated as though I am a child, I am a very intelligent individual who has always taken care of myself no matter how tough the situation.....more than you care to admit. I know what is going on with your lies and deceit but I play dumb just to be a mimic as I have lived my whole life for your sake not mine. It will not last this way because I will not have my intelligence insulted.....JUST STOP IT and leave me alone. I am so tired of playing your games, it is not genuine to me and if you don't believe in me and my son then there is no place for you in our lives. I AM NOT DEPRESSED OR BIPOLAR, I HAVE AUTISM!!!!Why can't you admit that?
You know who you are!
Tuesday, February 18, 2014
The latest news on the home front is that we went to see Griffin's psychiatrist yesterday and it was quite productive, we made some medication changes but after last night I found out that it wasn't going to work. The doctor took away the Clonidine because I needed to add Tenex in the afternoon for his ADHD because his behaviors were getting out of hand. She said that the drugs were so similar that it wasn't necessary to have them both on board. Well.....I tried just the Tenex in the afternoon and it worked but come bedtime it was just melatonin, Risperdal .5mg, Depakote 500 mg and that was all hence NO SLEEP! He was hyper. I fed him protein and had him lie down in the dark quietly to no avail. So I had no choice but to try one Clonidine....45 minutes later still awake so it was 10:00 and I thought this is ridiculous, I am giving him the other Clonidine and within 15 minutes he was fast asleep.
He went to school today for the first time in awhile, he had told me in confidence that he was scared of going back to school because he was afraid of doing science. He said that his science teacher Mrs. Boggs, who I think takes no interest in him, doesn't understand him and that she won't listen to him. Griffin said that the work was too hard and the math too. These are his regular education classes (inclusion classes with his peers). He obviously does not feel comfortable in there but in the IEP meeting the staff did not mention a thing about Griffin having any problems in his classes and I am not aware because the (bleeping) teachers won't communicate with me on a daily basis and let me know what is going on with him. I don't know if he is sleeping, eating or hungry, acting out or having calm behavior, he doesn't bring home school work so I don't know what kind of work he does in school or even his art work....NO REPORTS. So they say that they are going to put it on the IEP when we were in the meeting but LOW and BEHOLD .....there was no such written words as: we are going to communicate to mother on a daily basis through e-mail.....on the IEP..!
So now we are going to have to have yet another IEP because that document follows him to his next school next year and I want to know what is going on with him during his day for many reasons not just about his medications and behaviors but for his emotional well being, his educational needs. I need to know if his needs are being met because if the school is not doing it then I have to consider other options.
Today I have to call the doctor and ask her if it is okay to go ahead and give the two Clonidine since those two were the magic bullets. I finally got sleep because he didn't wake up in the middle of the night so I think that I got about 7 hours since I was able to take my medications for sleep. If I don't then I only sleep about 4 hours.
Please leave comments here and/or at Answers.com and let me know how I am doing. Thanks for dropping by and reading for the first time or for following me....you are greatly appreciated!
Saturday, February 15, 2014
Sunday, February 09, 2014
This is all after an incident of Griffin actually hitting a doctor who subsequently refused him treatment saying that he was too unstable and that if he didn't go to the hospital immediately that he wouldn't treat him until he became stable. Well, Griffin had been waiting 2 hours patiently with little to do, in fact I was proud of him for not having a meltdown sooner but finally after the PA expected him to sit quietly for too long.......he began to pace then he ran across the office building straight towards the doctor who shusshed him and told him "NO!" (Big mistake!) that was his trigger and Griffin made a bee line and hit him right in the arm. I can't say that the doctor deserved it but he certainly should have known better as an autism expert not to trigger a child with autism who is having a meltdown and make things worse. Then he had no compassion for him and refused treatment when if he truly cared he would have seen that it is children like Griffin who are the ones who need the most help right away. I was so frustrated, we just left and I called the intensive in home team for support.
Now Griffin is stable as far as his behavior goes but we just cannot seem to create a balance between his waking time....which is very short and his sleeping time which is taking over his life. We are weaning him off the Risperdal (thank goodness) his appetite is finally normal again. He is on Geodon now which is for his psychosis and to help him get to sleep which is a big problem, he is on melatonin as well but the problem is he cannot GET to sleep at night then he wakes in the morning eats, stays up awhile then goes back to sleep until about 1:00 p.m. or even later and there is no waking him.
It is truly a conundrum! I am in a fog about it and frankly I believe that everyone is as well. I have insomnia really bad and have to take medication for it or I will stay up for days and my dad has it too. I know that in Aspies it is pretty common to have insomnia or rather should I say in auties too (autism individuals).
I wanted to add that I am starting a new Facebook page that just has Aspies and Auties on it and things connected to it such as support groups, links, and pages etc...in order to reduce the anxiety in my life and to find the support and help that I need and desire from those who care about my sensitivities, those who understand that I have feelings too and who treat me with respect as an adult who is a responsible single mom of an autistic child giving me credit for that as well. I have already found that in these people, they listen to me instead of me being the one to always be the one who listens. I find great comfort in someone showing interest in what interests me, perhaps something that we may have in common or even if she just takes a moment to be genuine and honest. This is what I appreciate in Aspies, honesty and being straightforward. I am starting a new life and endeavor to embark on new beginnings, a new journey.....and it is exasperating!
Tuesday, January 28, 2014
Griffin's Recent Appointment With His New Doctor & "Avonte's Law" Tracking Devices For Autistic Children
Yesterday, Griffin, his Intensive In Home worker, and I attended a polycom conference with Dr.Vincent who I now admire and think that she is the bee's knees! She was so good with Griffin, so patient and understanding that he was becoming impatient, and she praised him for it as she tried her best to make the appointment as quick as possible......yet very thorough. She went over his history, asking all the vital questions and answering all of my questions satisfactorily in a timely manner. Griffin's worker only spoke up when he felt that perhaps the information he had was pertinent and germane to the topic at hand.
In my hurried exit out of the apartment with Griffin and Abby (the service dog), I had forgotten the questions I wanted to ask but between us we decided that he would start with a new anti-psychotic/mood stabilizer: Geodon, which I have taken before. In order to titrate off of the Risperdal which in my opinion is one hell of an EVIL medication causing nothing but problems! It raised his triglycerides, his weight (he was becoming obese) due to the fact that it made his appetite so ravenous that I couldn't keep him satisfied with food day/night, and it caused him to have to start taking Metformin for his blood sugar because he was becoming pre-diabetic and that is without eating sugar (she even said that he had Gynacamastia "male breasts" from taking it so long) .
So, hopefully the Geodon will mellow him out, stop the hallucinations, and balance his appetite again so that he can remain at a healthy weight. Then when he does begin exercising on a regular basis, it won't be so difficult for him and unpleasant.
Griffin had perfect patience, I was so proud of him....he didn't even get upset after we got out of the building which is what he usually does. He has his moments of triumph when he deserves a great deal of praise for his behavior and I told him that if he continues to have good behavior then I will pick him up on Friday from school and that we could go to the lake. After all it will be his 12th birthday!!! He wants to go to Fun Depot Saturday. I think that it would be a blast for us to go play together, besides we are best buds and we are super close to one another regardless of the spontaneous outbursts of bad behavior. It is all part of having autism, the brain is simply wired differently and oftentimes we get sensory overload and frustration takes over and self control goes out the window. But fortunately, it is quick and over in a matter of minutes if one knows how to cope when it rears its ugly head.
We have got to teach Griffin the skills now on how to cope with his anger/frustration with objects and people so that once he is in middle school and out in the general public then he will be able to socialize (only if he wants to) and focus on the task at hand while tuning out all the other sensory input that is distracting him. This is the concept that is so difficult for neuro-typicals NT's to understand is that our senses are working overtime 24/7 every single day of the year. It is like a fight or flight sensation that is constantly running through our bodies rushing adrenaline through our veins as though we are under attack. And our senses are under attack from either: too strong an odor that is making us sick, to a tactile sensation on our skin or other surfaces of our bodies that either is hyper-sensitive or is under sensitive to pain, food flavors, or clothing on our bodies, there is sensations of sound that when we hear certain pitches of noise it literally hurts our ears and causes sheer confusion and frustration from wanting to get away from it so badly. The visual sensations of light that hurt our eyes such as fluorescent or even natural light from the sun can cause a meltdown just because the light is so bright that it feels as though it is attacking our eyes so we always go into defensive mode and act out in some manner. Whether it be mood swings, which makes it common for misdiagnosis of Bipolar Disorder, and meltdowns, anger, rage, that is out of control. And this is why I was misdiagnosed as having Bipolar Disorder years ago, because nobody knew what to look for in an autism individual as a psychiatric patient. Those types of doctors typically do not study autism and are not able to diagnose it. One has to go to a specialist who has experience with autism.
That is until we learn the skills to assimilate into society and conform by imitating what we see or are taught to do to fit in. This is what Griffin is being taught at school however, I allow him to be himself while he is at home (within certain parameters) and out in public as long as he is cordial, uses his manners, and keeps an inside voice. My philosophy is that he didn't come into this world asking to be autistic with special needs so why should he have to conform and make himself full of anxiety all the time around other people just to suit their needs and desires? If people can't accept that he has autism then they can go jump off of a cliff with their judgment attitudes. Nobody is perfect, Nobody is "Normal" it is just a setting on the dryer......and nobody has the right to judge my son for who he is whether they realize he has autism or not.
Furthermore, my entire life I have known that I was different, that I didn't fit in and that my parents were taking me to psychologist/psychiatrists to talk for some special reason, after all my siblings weren't going. I knew that I wouldn't talk to anyone or look them in the eye because I was always being told to "speak up" and my chin was always being lifted by an adult's hand in order to try to make me look them in the eyes. But it was unnatural for me and extremely uncomfortable therefore their efforts were all in vain. I recall that my sense of smell was so strong that even the slightest "bad" odor would make me vomit, have migraine headaches and a few times I have passed out from being so dizzy. I have always been allergic to the sun even though I tried to fit in by attempting to get a tan by lying out in it and getting horrible sunburns, my blue eyes are exceptionally sensitive to the sun and to indoor lighting as well. Certain people's voices set me off especially if they are soprano, high pitched, and if they can't sing it irritates me to no end I could just scream! I am attracted to extra strong flavors in my food and if (when I had the money way back when) I had money I would be a food snob because I know what excellent food is and have the pallet for it.
These are but a few of the indications of autism through the sensory issues of the brain. The autistic mind is simply wired differently as is the entire nervous system therefore it understands the world in a whole different way. I have lived a lie my entire life trying to fit in as a good looking thin woman who attracted good looking men and always got the husband she wanted but now I am being true to myself and "coming out" as the autistic individual that I am. I have found only a small bit of support for my good news....and yes it is "good news" because I finally have answers to why I have been so unique and peculiar my whole life! I am reveling in it and seeking out support with other Aspies and Auties (Aspergerians and autistics) because I know that they will understand me. I have already found some people on YouTube who have given me insight and encouragement. The rest of the NT world will just have to learn to cope with me and Griffin being different because we are proud to be autistic!!!!!!!
Following is the definition of autism its signs & symptoms, and treatments.
Written by the Healthline Editorial Team | Medically Reviewed by Jennifer Monti, MD, MPH
Published on August 9, 2012
Signs & SymptomsSigns of these disorders usually become apparent in children by the time they are 3 years old. Autistic symptoms include a significant delay in language and cognitive development, while there is no significant language or cognitive development delay in Asperger syndrome. Because there are not significant language impairments in Asperger when compared to autism, Asperger syndrome may be referred to as "high functioning autism."
Symptoms can range from mild to severe. Some people may be considered autistic but function in society without issues, while for others, the condition can have a substantial impact on their lives and on the lives of those close to them.
DiagnosisAutism spectrum disorders are found across the world, seemingly regardless of race or cultural and economic background. ASD occurs more often in boys than in girls, with a 4:1 male:female ratio.
The U.S. Centers for Disease Control and Prevention (CDC) state that the numbers affected by autism are estimated to be around one out of every 110 children in the United States. However, various epidemiological studies have found varying rates of the condition, ranging from between one out of 80 children to one out of 240 children.
There are indications that instances of ASD are on the rise, but experts debate whether it is an actual increase or rather a case of more frequent diagnosis.
Types of Autism Spectrum DisordersAs its name infers, ASD refers to a range of symptoms.
ASDs were first defined as disorders in the 1940s by two different researchers working independently of each other. Dr. Leo Kanner studied what would come to be defined as severe or classic autism. At the same time, Dr. Hans Asperger defined the condition that now bears his name.
Classic autism usually entails substantial problems in all of the areas affected by ASDS, while someone with Asperger usually has issues with behavior and social interaction but often does not have problems with developing language. The symptoms experienced by people with Asperger are often also less severe.
There is debate as to whether Asperger Syndrome is a variation of classic autism (high-functioning autism) rather than a separate disorder.
PDD-NOS is a classification given when someone is exhibiting signs of autism but does not otherwise fit into the categories of classic autism or Asperger Syndrome.
Causes, Treatments & OutlookThe exact cause of autism and other autistic spectrum disorders is unknown. The most current science demonstrates that there is not a single cause for autism but that the disease is multi-factorial with a strong genetic component.
There is no cure for ASDs. The most effective treatments involve the use of early intensive behavioral interventions to improve the function of the child. It is generally agreed that the earlier a child is enrolled in these programs, the better their outlook.
After the tragic and untimely death of an autistic 14 year old teen drown in New York City in the East river, Senator Charles Shumer is taking action to help all autistic children get tracking devices in order to diminish the number of children wandering/eloping/bolting off out of sight from their provider or parent.Oftentimes, the autistic child who is exceptionally curious about the world around him, will wander off away from safety without a thought of getting lost and not being able to get back to his parent/care provider. Just as Griffin will wander off no matter where we are, whether it be in the grocery store, parking lot, outside our home, or in the park or public facility. And all I am left to do is to cry out to him loudly in hopes that he is within earshot and that he will call back.
- Nearly half of all autistic children in the USA: 48% attempt elopement, which is 4 times higher than their unaffected siblings.
- In 2008, Danish researchers found that amongst the autistic population the mortality rate was at least twice as high as it was than with the general population.In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.
- More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number
- Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
- 32% of parents reported a “close call” with a possible drowning
- Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
- 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
- 40% of parents had suffered sleep disruption due to fear of elopement
- Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings
- Half of families with elopers report they had never received advice or guidance about elopement from a professional
- Only 19% had received such support from a psychologist or mental health professional
- Only 14% had received guidance from their pediatrician or another physician
Here is the website for a GPS tracking bracelet especially for autistic children..
Saturday, January 25, 2014
ADHD, Anxiety and Autism?
Interactive Autism Network at Kennedy Krieger Institute
Are these behaviors just a part of autism spectrum disorder, or do these children have another psychiatric condition? Does it matter?
Some researchers believe that conditions such as Attention Deficit Hyperactivity Disorder (ADHD), anxiety disorder, Obsessive Compulsive Disorder (OCD) and depression are "under-recognized" in youth with autism, which, in turn, "hampers clinical care and treatment."1 After all, how can you treat what you don't diagnose?
The cost of untreated conditions may be high. Depression, for example, may put someone with autism at risk for suicide, withdrawal and aggression.2
Health care providers have a variety of treatments for anxiety, attention-deficit, obsessive-compulsive and other disorders in their arsenal. "There is no specific treatment for autism, but there are treatments for many of the [other] psychiatric disorders that occur in children with autism," concluded one group of researchers.3
What's Known about multiple diagnoses?Research into the co-existence of psychiatric disorders with autism is limited. Some doctors have believed that anxiety, obsessiveness, inattention and hyperactivity are part of autism itself. Until 2013, in fact, the manual that physicians used to diagnose psychiatric conditions told them not to diagnose ADHD in children with autism.4 However, many health care providers did so anyway, according to a study by the Interactive Autism Network (IAN).14
One group of researchers acknowledged the difficulty in learning how many people with autism have other mental conditions. "Various types of anxiety are believed to be so common in autism that symptoms of anxiety disorders have been thought by some clinicians and investigators to be aspects of autism," rather than separate conditions, they said.3
Studies have found widely varying rates of other psychiatric problems among people with autism, depending on the population studied and the methods used. Those co-occurring conditions include: depression (affecting 2 to 30 percent), ADHD (affecting 29 to 83 percent), OCD (1.8 to 81 percent), and other anxiety disorders (2.9 to 35 percent).1, 3, 5-8, 14
OCD is a type of anxiety disorder marked by obsessions and compulsive rituals that are time-consuming and distressing. The huge variation in rate is likely due to different methods of assessing OCD and judging impairment from it.3
The new diagnostic manual, published in 2013, acknowledges that most people with autism have psychiatric symptoms that are separate from autism itself. About 70 percent of them "may have" another mental disorder and 40 percent "may have two or more" such disorders, according to the fifth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, or DSM-5.9 That manual, sometimes called the psychiatrists' "bible," urges doctors to diagnose ADHD, anxiety, depression and other co-morbid conditions in people with autism when appropriate. A co-morbid condition is one that occurs along with autism.
A study of 112 children with ASD found that 70 percent of them had at least one other diagnosis and 41 percent had two or more, including social anxiety disorder, ADHD and oppositional defiant disorder (ODD).10 People with ODD have a pattern of angry or irritable moods, defiant behavior or vindictiveness.
Special challenges for people with two or more disordersHaving a child with more than one disorder presents special challenges to families, according to several parents who participated in the Simons Simplex Collection autism research project. In interviews, several said their children with autism spectrum disorder also have conditions such as OCD, anxiety, bipolar disorder or ADHD.
One mother, whose teenage son has ADHD and autism, said it can be hard teasing apart which condition is causing which symptoms. "I have a hard time deciphering which is which, the ADHD or autism," she said. One thing of which she is certain, "Without the ADHD medication, his aggression is difficult to manage."
Having a second diagnosis can lead to better, more effective treatment for the children, said parents in the Simons project. There are medications and therapies proven to work in both OCD and ADHD, for example.
Kriston Norris, whose family was profiled in "Learning to Adapt," said her son with autism was helped by OCD treatments after receiving an OCD diagnosis. She also sought help from his school after learning her son also has OCD. Knowledge of a second diagnosis can help teachers craft an Individualized Education Program (IEP) or school accommodations that address all of a student's needs, not just the main symptoms of autism.
For some parents, the pursuit of another diagnosis led to new insights into their child's challenges.
One mother said her son was diagnosed with autism at age 3 and bipolar disorder at 5. Her son always had problems with muscle tone, which was believed to be "part of autism," she said. However, in 2013, a doctor diagnosed her son with a duplication of the 15q chromosomal region, a genetic condition that may explain all of his symptoms. Doctors find these duplications more often in children with autism, intellectual disability or other developmental delays.11
Her son's bipolar disorder falls into the general category of mood disorder, along with depression. Mood disorders are not uncommon in autism. Neither is medication use. A study of 1,605 children in the Simons Simplex project found that two out of five had used psychiatric medication, primarily ADHD drugs, antidepressants and "mood stablizers."12 Mood stabilizers include antipsychotic drugs, seizure medicine and lithium, which is often used to treat bipolar disorder.
A smaller study of 160 children with ASD found that about one-fourth of them had a mood disorder and almost a third had "aggressive/self-injurious behaviors." That study found some children who appeared to have OCD, but researchers did not report the number because they could not "reliably" distinguish between OCD and "autistic rituals."13
The art of diagnosisThat raises another issue identified in several research studies: how do you diagnose certain conditions in people with autism if they have problems describing their symptoms? Even if a patient has some language, will he describe his emotions or obsessions in the same way as someone who doesn't have autism? "This type of information can only be elicited in older, verbal, less severely affected individuals," according to one research team.13
The psychiatric manual (DSM-5) offers some advice on this. A change in sleep or eating, and an increase in "challenging behavior, should trigger an evaluation for anxiety or depression" in people with autism who have limited or no language.9
But do the tools used to diagnose other psychiatric conditions work well when used with people with autism? Outside of a research setting, health care providers do not have "standardized scales" for assessing all other psychiatric disorders in people with ASD, according to the Interactive Autism Network study.14 That may complicate the process of diagnosing another mental disorder in someone with autism. A group of researchers tested a tool called the Autism Comorbidity Interview-Present and Lifetime Version several years ago; the tool would help doctors diagnose other conditions in people with autism. They concluded the tool was reliable but warranted further study among people of different ages, intelligence levels and verbal abilities.3
Thanks to scientific advances, doctors have come to understand that the boundaries between different disorders are blurrier than they believed just a decade or two ago. "Many symptoms assigned to a single disorder may occur, at varying levels of severity, in many other disorders," according to the DSM-5. Doctors will continue to use their clinical training and experience to sort it all out, the manual suggests.15
Paul H. Lipkin M.D., director of IAN, welcomes the changes in how children are diagnosed and treated. “While children with autism spectrum disorders share common social, behavioral, and communication difficulties, some have other developmental or behavioral problems that are not part of this diagnosis. With DSM-5, ASD is now considered distinct from these other conditions. This not only better highlights the individuality and special needs of each child or adult with ASD; it also allows family and professionals to target a person’s difficulties with more specific and, we hope, better therapies and medical treatments,” he said.
Thank you to the families of the Simons Simplex Collection who contacted us and who provided the idea for this article.
Thursday, January 23, 2014
Wednesday, January 22, 2014
I have made it a point to keep him away from the computer and cell phone as much as possible and to increase our quality time together snuggling, talking about things that bother him, things that he wishes for, and things that he dreams of but he is in puberty now and needs his alone time/privacy as well do I so we each have our space every day that we keep to ourselves. I believe that both are important and essential because I nurture our relationship and bond helping it to grow and progress while respecting one another's individual needs for space and privacy.
While we were having one of our bonding moments talking to one another cuddling, Griffin confessed to me that he had secretly been liking 2 girls one named Sonya and one named Kathleen and he didn't know which one to marry. I had to hold back the grin and remain serious as to not hurt his feelings as I explained to him that he is too young for marriage and sex that right now all he should be doing is talking to girls.....but not about sex or body parts. With autism one has to be very straightforward and clear there can be no ambiguity no blurred lines. I told him that he can talk to both of them that he doesn't have to choose between them. He told me that he liked Sonya because she was fat and that he liked how she was squishy. Then I had to grin I couldn't help it. He said that he thought that she was very pretty. I told him that was very nice. I told him that it was nice that he sees her for the person that she truly is and that he has a big heart. Of course then I had to explain what "a big heart" means because with autism individuals take things literally. With autism and Asperger's individuals don't read between the lines when one tries to drop a hint or beats around the bush, speaks sarcastically, the individuals do not pick up on it like neuro-typicals do. There is just a confused person when one does that to them.
There is so much on the Internet that is great for him to see and enjoy because he laughs so hard most the time as he watches old commercials from the 60's, 70's, 80's, & 90's. He is so into advertising icons and representations of commercials from old TV ads. He even has the songs/jingles memorized and the features of the cereal boxes, candy wrappers, etc...He also loves old TV shows like Andy Griffith, and Full House.
Griffin is a "Furry" that means that he has a fascination with the world of furry animals such as animated animals. He still has a room full of stuffed animals and is closely bonded to them, keep in mind that his mentality is that of about a 4 year old even though he is about to turn 12. He has a Big Bird in which he is very tightly bonded to that he has had since he was 2 years old that a young man so kindly gave to him in a Goodwill store in Anchorage, Alaska. We were shopping but didn't have enough money to buy it but Griffin grabbed it and wouldn't let go so the clerk gave it to Griffin....I will never forget him. Griffin is lost without this stuffed animal and in fact all of them. If I tried to take away any of them he would know exactly which one was missing and would go bezerk until I got it back. Being a Furry means that an individual grows up loving furry things more than the average person, usually these people (who have their own community and website: look up "Furries") dress up like animals, sometimes they isolate themselves exclusively into their own community because nobody else understands them.....which I completely understand how that goes. They have conventions where they dress up not saying that Griffin will ever go that far but when I looked up the definition and description he fit it. Mostly because he is so fascinated with animation, animals, animated images and videos, cartoons, and comics. Not to mention Sesame St., Barney, Kratt Brothers, his love for birds & cats, and anthropomorphic (animals dressed up as humans) characters such as Arthur.
His therapist told me yesterday that he will have to be in a group home when he grows up due to his adaptive skills being so low (those are his skills of how he can take care of himself as an individual without assistance). And I told him that "I know that, I have accepted that....." But that doesn't mean that I don't worry about it. He will be safer in a group home, I only hope that we can find one before I pass away that will treat him right and that he gets along with the other members. Group homes have a high turnover rate and one never knows how the members are being treated when they are having meltdowns and they are not being monitored by their superiors. Also there is a possibility of Griffin running away from the group home, that is not uncommon at all. But I have got to let go of that for right now because that is in the far future and I have too much to deal with right now. However, I do have to think about how I am going to pay for his group home or someone is. That, I do have to do NOW. I have to organize funding on services for him now so that it will be set up in the future. Most people think that it is too far away to think about but really the way the system works, as slow as it is, one has to start now in order to get what we need in 6 years or so. He may not need a group home at 18 years old, he may still be with me but I have got to be prepared.
Here are some pictures of Griffin with his cat "Dot" who he loves dearly. She loves him too.