HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Undiagnosed and Misdiagnosed Aspergers

Aspergers manifests in many ways that can cause difficulties on a daily basis.

Here are some examples of what to look for:

• Being naive and trusting
• Confusion
• Delayed motor milestones
• Delighting in fine details such as knobs on a stereo
• Difficulty in conversing
• Difficulty with multitasking
• Extreme shyness
• Lack of dress sense
• Mixing with inappropriate company
• Not understanding jokes or social interaction
• Quoting lists of facts
• Unusual and obsessional interests

One of the worst problems is that you can never really understand what is going on inside your youngster's head. This makes it so difficult for you to understand his behavior. This can leave you feeling emotionally beat-up and completely useless as a parent. You may have to cope with crisis on a daily, hourly or even minute-by-minute basis.

Undiagnosed Aspergers—

Undiagnosed Aspergers is an issue that concerns me because so many kids have Aspergers and are struggling to make it in this world with very little help or resources. Just today, I met someone who said that it was suggested that their youngster had Oppositional Defiant Disorder (ODD) without anyone recognizing the other behaviors that are just as relevant.

There are many characteristics for Aspergers, but one thing that goes unnoticed is that there can be a secondary diagnosis clouding the picture and causing undiagnosed Aspergers. Many kids with Aspergers also have ADHD, for example. ADHD can cause behaviors that draw an excessive amount of attention, thus the undiagnosed Aspergers can be overlooked.

Commonly undiagnosed conditions in related areas may include:

o ADHD -- Undiagnosed
o Adult ADHD -- Undiagnosed
o Alzheimer Disease -- Undiagnosed
o Bipolar Disorder -- Undiagnosed
o Concentration Disorders -- Undiagnosed
o Epilepsy -- Undiagnosed
o Migraine -- Undiagnosed
o Schizophrenia -- Undiagnosed
o Stroke -- Undiagnosed

Undiagnosed Aspergers Leads To Life as an Outsider

For most of his life, Michael felt like an outsider. Restless and isolated, he was over-stimulated and uneasy around others. Finally, when he was 45, he was diagnosed with Aspergers, a syndrome that falls within the autism spectrum. The diagnosis came as a relief: Here, finally, was an objective explanation for some of my strengths and weaknesses

People with Aspergers often struggle to interact with groups and understand social norms. Michael describes himself growing up as a "very lost little kid" who acted out in school by making faces at teachers and being aggressive with the other students. His ability to connect to others didn't improve with age.

Music — particularly the repeating patterns of melody — provided him with a refuge from an early age. He remembers listening to his mother's record collection and experiencing a "passage into a world where everything made sense." He compares listening to music to watching clouds change slowly over the course of an afternoon.

As for his diagnosis with Aspergers, Michael says it has helped him accept the parts of his nature that are "not very changeable." Wearing eyeglasses, for instance, makes him feel like he is "being intimate with everybody on the street." As a result, he rarely wears them now — even though he received his first prescription for glasses when he was in kindergarten.

Misdiagnosed Aspergers—

Many kids with Aspergers are misdiagnosed as having ADHD with no investigation by medical professionals of the possibility of Aspergers. In one case, a child was treated for ADHD for years before anyone mentioned Aspergers.

Asperger syndrome can be a difficult diagnosis to make because there is no single test to detect it. An accurate diagnosis generally requires the evaluation of a team of professionals who are specialists in developmental disorders. In addition, the symptoms of Aspergers are similar to some symptoms of some other disorders. This can result in a delayed or missed diagnosis. For example, some people with Aspergers may be misdiagnosed with "mild" form of autism disorder. However, the two conditions are different and distinct disorders. Kids and adults with Aspergers may also be misdiagnosed with other conditions with some similar behaviors, such as obsessive-compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD).

The other conditions for which Aspergers is listed as a possible alternative diagnosis include:

• ADD
• Autism
• Schizoid Personality Disorder
• Schizotypal Personality Disorder

Other Common Misdiagnoses:

• ADHD under-diagnosed in adults: Although the over-diagnoses of ADHD in kids is a well-known controversy, the reverse side related to adults. Some adults can remain undiagnosed, and indeed the condition has usually been overlooked throughout childhood. There are as many as 8 million adults with ADHD in the USA (about 1 in 25 adults in the USA).

• Bipolar disorder misdiagnosed as various conditions by primary physicians: Bipolar disorder (manic-depressive disorder) often fails to be diagnosed correctly by primary care physicians. Many patients with bipolar seek help from their physician, rather than a psychiatrist or psychologist.

• Blood pressure cuffs misdiagnose hypertension in kids: One known misdiagnosis issue with hypertension arises in relation to the simple equipment used to test blood pressure. The "cuff" around the arm to measure blood pressure can simply be too small to accurately test a youngster's blood pressure. This can lead to an incorrect diagnosis of a child with hypertension. The problem even has a name unofficially: "small cuff syndrome".

• Brain pressure condition often misdiagnosed as dementia: A condition that results from an excessive pressure of CSF within the brain is often misdiagnosed. It may be misdiagnosed as Parkinson's disease or dementia (such as Alzheimer's disease). The condition is called "Normal Pressure Hydrocephalus" (NPH) and is caused by having too much CSF, i.e. too much "fluid on the brain". One study suggested that 1 in 20 diagnoses of dementia or Parkinson's disease were actually NPH.

• Kids with migraine often misdiagnosed: A migraine often fails to be correctly diagnosed in pediatric patients. These patients are not the typical migraine sufferers, but migraines can also occur in kids.

• Dementia may be a drug interaction: A common scenario in aged care is for a patient to show mental decline to dementia. Whereas this can, of course, occur due to various medical conditions, such as a stroke or Alzheimer's disease, it can also occur from a side effect or interaction between multiple drugs that the elderly patient may be taking. There are also various other possible causes of dementia.

• Depression undiagnosed in teenagers: Serious bouts of depression can be undiagnosed in teenagers. The "normal" moodiness of teenagers can cause severe medical depression to be overlooked.

• Eating disorders under-diagnosed in men: The typical patient with an eating disorder is female. The result is that men with eating disorders often fail to be diagnosed or have a delayed diagnosis.

• Mesenteric adenitis misdiagnosed as appendicitis in kids: Because appendicitis is one of the more feared conditions for a youngster with abdominal pain, it can be over-diagnosed (it can, of course, also fail to be diagnosed with fatal effect). One of the most common misdiagnosed is for kids with mesenteric adenitis to be misdiagnosed as appendicitis. Fortunately, thus misdiagnosis is usually less serious than the reverse failure to diagnose appendicitis.

• Mild worm infections undiagnosed in kids: Human worm infestations, esp. threadworm, can be overlooked in some cases, because it may cause only mild or even absent symptoms. Although the most common symptoms are anal itch (or vaginal itch), which are obvious in severe cases, milder conditions may fail to be noticed in kids. In particular, it may interfere with the youngster's good night's sleep. Threadworm is a condition to consider in kids with symptoms such as bedwetting (enuresis), difficulty sleeping, irritability, or other sleeping symptoms. Visual inspection of the region can often see the threadworms, at night when they are active, but they can also be missed this way, and multiple inspections can be warranted if worms are suspected.

• Mild traumatic brain injury often remains undiagnosed: Although the symptoms of severe brain injury are hard to miss, it is less clear for milder injuries, or even those causing a mild concussion diagnosis. The condition goes by the name of "mild traumatic brain injury" (MTBI). MTBI symptoms can be mild, and can continue for days or weeks after the injury.

• MTBI misdiagnosed as balance problem: When a person has symptoms such as vertigo or dizziness, a diagnosis of brain injury may go overlooked. This is particularly true of mild traumatic brain injury (MTBI), for which the symptoms are typically mild. The symptoms has also relate to a relatively mild brain injury (e.g. fall), that could have occurred days or even weeks ago. Vestibular dysfunction, causing vertigo-like symptoms, is a common complication of mild brain injury.

• Parental fears about toddler behavior often unfounded: There are many behaviors in infants and toddlers that may give rise to a fear that the youngster has some form of mental health condition. In particular, there is a loss of fear of autism or ADHD in parents. However, parents should understand that the chances are higher that it's part of normal development, and perhaps just a "cute behavior" rather than a serious condition. Although parents should be vigilant about monitoring all aspects of their child's development and mental health, they should also take care not to over-worry and miss out on some of the delights of parenthood. For example, a young child that screams when you open his car door to take him out, then makes you put him back into the car to repeat it, so that he can open the car door himself, is not necessarily showing signs of autism or OCD, nor indeed any mental illness. There is a small possibility that it's an abnormality (a chance that increases with age of the youngster), but it's also the type of behavior seen in many normal kids.

• Post-concussive brain injury often misdiagnosed: A study found that soldiers who had suffered a concussive injury in battle often were misdiagnosed on their return. A variety of symptoms can occur in post-concussion syndrome and these were not being correctly attributed to their concussion injury.

• Undiagnosed anxiety disorders related to depression: Patients with depression may also have undiagnosed anxiety disorders (see symptoms of anxiety disorders). Failure to diagnose these anxiety disorders may worsen the depression.

• Undiagnosed stroke leads to misdiagnosed aphasia: BBC News UK reported on a man who had been institutionalized and treated for mental illness because he suffered from sudden inability to speak. This was initially misdiagnosed as a "nervous breakdown" and other mental conditions. He was later diagnosed as having had a stroke, and suffering from aphasia (inability to speak), a well-known complication of stroke (or other brain conditions).

The Aspergers Comprehensive Handbook

10 comments:

Kathleen Blackmon said...

My 7-year-old son has been having violent fits for years. At the age of 3 he was diagnosed with ADHD. Over the last 4 years he had also been diagnosed with ODD, Mood Disorder (unspecified), Anxiety and Depression.

In doing my own research I came across Aspergers and asked his Drs about it. They all said no.

I had to have him committed to an in-house mental health facility this past week for violent behavior toward his younger siblings. He's been suspended 4 times in the past 30 days from school for violent behavior.

Now that he's in-house, the Drs are saying Aspergers. Is this normal that a parent can come up with a diagnosis that is thrown out or ignored and then years later the Drs catch up? I'm very upset that he could have been getting the correct help years ago instead of having to go through all of this.

Erica said...

Kathleen,

To answer your question in one word... yes. Many parents that I know have gone through this same thing. A parent is the expert on their child. It is very common for the parent to know what's wrong with their child before the professionals do.
I personally understand what you are going through. My 12 year old son was like this. At the age of 6 he was diagnosed with ADHD. For the last 6 years we have had difficulties with him(on and off). He has had so many diagnoses such as ADHD, OCD, ODD, and the latest being Bipolar NOS.
I'm so frustrated at all of these so-called professionals. For a long time now, I have believed that my son has Asperger's syndrome. Everyone says no. The dr.s that have seen him have spent no more than 30 minutes with my son before diagnosing him.
The developmental neuro psychologist that just diagnosed him with bipoloar nos had his assistant spend 2 hours with him doing motor skills testing and had me fill out 8 papers about his behaviors. He overlooked so many of his Aspergerian traits.
You, as the parent, know your child best. I'm still in the middle of a war with professionals. I know my son doesn't have bipolar nos. His agressive behavior has always been brought on for a specific reason. His moods don't cycle and he has never had any sleep problems. He shows many, if not all, of the symptoms of Asperger's syndrome. We also have a family history of Autism and Tourette's.
So, needless to say, our battle is ongoing. I wish you the best of luck with your son.
Hugs,
Erica

frustrated117 said...

My 12 year old daughter has so many Asperger Syndrome characteristics and I have a brother and an uncle with the disorder. My daughter has been diagnosed with ADD, Anxiety dsorder, Oppositional Defiant Disorder (the one that angers me the most), and been looked at for possible bipolar disorder. I have brought the family history and her matching criteria (overwhelming) to her school psychologist, pediatrician, and two psychiatrists, all who wave me off without even considering what I'm suggesting. Now this child who tests 3 grade levels ahead has 2 F's, 2 D's, and a C, has no friends outside of school, and the whole house is miserable. I'm at a loss to find someone to help or even attemp to properly diagnose her. Anyone have any suggestions?

Anonymous said...

Thank you for this link. My son has been diagnosed "officially" for about a year and a half, but I sought help for us about four years ago. I understand the Asperger's stuff I read, but I still never quit understand what in going on inside his head. Just when I think I understand something, something changes.

Anonymous said...

Luckily as an AS single parent of an AS daughter I don't have this problem so much. We have some differences, and I feel like I've outgrown the most crippling aspects of AS due to a really good alternative high school education, but I know what it's like for her. We're a perfect team in some ways, but in others we are totally at odds... I have major tactile and auditory sensitivities, she is hyposensitive and loves to invade my space and torture me because no matter what, I really can't avoid going completely NUTS if someone screams in my ears or touches me too lightly. It sucks!

Paul said...

My son is now 27 , but did not recieve a diagnosis of Aspergers until after he was 19. Prior to that, he was ADD, ADHD, Oppositional Defiant, BiPolar, and Schizophrenic. A complete psychological/neurological evaluation was never performed until he was 19. At the time, AS was not known about and most doctors did not want to take the time to perform any lengthy evaluations. In addition, AS preseents many of the same traits as ADD, ADHD, and BiPolar. Terry has been in the hospital more than 20 times for violent outbursts and on 4 separate occasions, the police had to be called to subdue him. Luckily, the police would take him to the hospital and not to jail. As parents, we know our children, but also, we can be biased and that is why some doctors do not give much attention to what the parents say. You have to keep up with getting the doctor to perform the evaluation or keep trying new doctors that are willing to listen. Unfortunately, any misdiagnosis can also cause mistreatment. While my son has AS, he is also bipolar and hypothyroid. Any change in medication for one, affects the other. It is a balancing act that my sons current doctors and therapists keep a very close eye on.

Laci said...

my 14 yo girl was misdiagnosed with aspergers when she actually has social anxiety disorder

LOSTDADandMOM said...

***Lost need help****
We have a 4 yr old son. He is a wonderful boy as all ours are. He is in preschool now. He has exibited anger issues he will hit scream kick at his mother and I at home. Typically he will have been put in timeout at school for hitting or pushing. We decided after several outburst very close in time to seek professional help. both being open to counsel we went to our first visit, his mom and me first time basic info etc. But she did offer an opinion of possible ADD/ADHD. both knowing htat probably wasnt the case. after her first visit with him and another outburst at school, we had a Emergency meeting with her. Her opinion this time is Asbergers. I have reserves about 2 visits and 2 diagnosis, however being a highyl concerned mom and dad we are open to researching and doing what we need to do. I have been reading into AS I see him qualifying for maybe 2 or 3 categories, but most of these categories are not addressing the anger and sometimes rageful behavior he exhibits. Could AS being or ADD etc be misdognosed for a true anger aggression development issue. Trult lost a Dad looking for direction...thank you

mylilfamily7 said...

My 9yr old son, Im certain, has Aspergers. I'm lost! He's the eldest of our 5 children & its a constant battle. It's very time consuming & you need lots of patience. His dad and I have, until recently, thought it was attention seeking, and just him being 'a naughty boy'.
But my poor little man doesn't comprehend...I don't know, its like nothing sinks in...instructions (like keep your hands to yourself, get dressed, was hands etc).
I feel guilty because I can now see in his eyes that he doesn't do this on purpose....he has no control over it. And the time outs hes had & being in trouble all the time..i feel like ive let him down, i havent understood him like I should have :-( I'm worried as I don't know alot about Aspergers (have been non stop reading about it though).
His dad isn't as patient as me, and doesn't understand as much...probably lack of knowledge.
He's very smart & friendly, beautiful nature, but constantly hassles & is violent toward his 5 yr old brother....& now with his sisters too (even the 2.5yr old).
I'm not a believer in medicating kids but every day is getting more of a struggle, is affecting the whole family, his dad & my relationship, his grades are starting to drop as he's falling behind...not completing tasks, not listening & lack of concentration.
I'm just lost..asking for help, ideas, do I just go to GP and voice my concerns, opinions? This has been going on for years but has become ALOT worse & FULL ON in the last 6 months....
HELP PLEASE..someone who understands, can relate, anything...

Constance Freundt said...

Hello,

This thread is very old, but I'm posting anyway in the hope someone will see it. I am searching for someone that works with diagnosing adults with Autism for re-diagnosis of my 18 year old daughter. She was diagnosed with ADHD-NOS at age 13 and the evaluator indicated in the report “Savannah has an unusual presentation which warrants continued monitoring for emergence of more severe psychopathology.” The evaluator verbally indicated to me that "something more" than ADHD was going on, but she wasn't sure what. My daughter's therapist at the time said she believed the evaluator saw potential schizophrenia in the future (my daughter was very un-grounded and never seemed to know what was going on). The evaluator's recommendations read like something one would get with an Aspergers/HFA diagnosis.

When she was 15, my daughter was re-evaluated because she was self-injuring and having suicidal ideation. This time the diagnosis was ADHD-Inattentive Type and Major Depressive Disorder. Over the past 4 years, she's been on a 504 Plan at her high school for her ADHD, but the issues she has do not fit with the ADHD accommodations. She has sensory issues and trouble communicating, unless she has a close relationship with her teacher(s). She has been placed in special programs with smaller class sizes and fewer teachers, and she thrives! When returned to the regular classes she tanks again and comes up with headaches, stomachaches and fatigue as well as anxiety. Freshman and sophomore year, When she was really stressed she would do ballet spins and unconsciously singing out loud. Her therapist said they are "stims." She also has no friendships outside of school, but many friends (acquaintances) at school. Her friendships fizzle out because she rarely initiates anything with them. She only responds IF someone asks her to do something. She has a boyfriend now and was overwhelming him mainly because she has no friends. She asked if she could re-start CBT again a few months ago due to the issues she's causing in their relationship.

She is on her 3rd CBT therapist since 5th grade because the 1st 2 said she had a "wall" or was "blocked" and they couldn't reach her. Her 3rd CBT therapist stopped services after their 2nd session a few months ago because she said "Savannah's participation indicates that she's obviously not open to this" even though my daughter requested starting up again. I explained to the therapist that my daughter doesn't know how to communicate and the therapist agreed to try again. So, now I sit in on all the sessions and act as a conduit or facilitator because I know how to draw my daughter out. However, the CBT is now causing my daughter anxiety and thus, she has been placed on an SSRI.

My daughter is 18 now, seems terrified at the mere mention of driving, can't bring herself to go on a job interview, and is overly dependent on me and her boyfriend. She does not like to do anything alone. She won't leave my condominium complex unless she has someone with her; she has only walked somewhere alone once in her entire life and I was on the phone with her while she did it. She won't even call and order a pizza or Chinese take away and if I push her to do it, she just foregoes the pizza, etc. She wants to go to college in CA (we live in IL), but only if me and/or her boyfriend move out there with her. She had a panic/anxiety attack when I tried to talk to her about going by herself AFTER we visited the school and spent a week out there.

I believe she has Aspergers or HFA and is misdiagnosed. I feel like I failed her as a parent because I know she missed out on autism therapies which could have helped her. I would like to get her re-evaluated as I believe she could use the autism vocational therapies for work, college and independent living. Does anyone know of an evaluator who specializes in adult HFA?

Thanks.

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the Aspergers child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

How to Prevent Meltdowns in Aspergers Children

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's child is totally out-of-control. When it ends, both you and the Asperger’s child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

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Parenting Defiant Aspergers Teens

Although Aspergers is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager with Aspergers are more difficult than they would be with an average teen. Complicated by defiant behavior, the Aspergers teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

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Aspergers Children “Block-Out” Their Emotions

Parenting children with Aspergers and HFA can be a daunting task. In layman’s terms, Aspergers is a developmental disability that affects the way children develop and understand the world around them, and is directly linked to their senses and sensory processing. This means they often use certain behaviors to block out their emotions or response to pain.

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Older Teens and Young Adult Children With Aspergers Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with Aspergers face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

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Living with an Aspergers Spouse/Partner

Research reveals that the divorce rate for people with Aspergers is around 80%. Why so high!? The answer may be found in how the symptoms of Aspergers affect intimate relationships. People with Aspergers often find it difficult to understand others and express themselves. They may seem to lose interest in people over time, appear aloof, and are often mistaken as self-centered, vain individuals.

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Online Parent Coaching for Parents of Asperger's Children

If you’re the parent of a child with Aspergers or High-Functioning Autism, you know it can be a struggle from time to time. Your child may be experiencing: obsessive routines; problems coping in social situations; intense tantrums and meltdowns; over-sensitivity to sounds, tastes, smells and sights; preoccupation with one subject of interest; and being overwhelmed by even the smallest of changes.

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Unraveling The Mystery Behind Asperger's and High-Functioning Autism

Parents, teachers, and the general public have a lot of misconceptions of Asperger's and High-Functioning Autism. Many myths abound, and the lack of knowledge is both disturbing and harmful to kids and teens who struggle with the disorder.

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Parenting Children and Teens with High-Functioning Autism

Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

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to read the full article...

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