The World According to Stephan
(PDF)
My Family's Asperger's Syndrome
By Jessica Vosgerchian (PDF)
Insight about
being autistic
From Amanda Baggs who has autism and was seen on CNN.
Masha, an adult woman who found out she had Asperger's Syndrome (AS) from her Daughter's
Psychiatrist, after her daughter was diagnosed with AS talks about what her Aspie daughter's
struggles.
My daughter's biggest struggle and challenge is loneliness.
She does not feel accepted by the more affluent parent's in our town.
There aren't any children that are assessible to meet or play with outside on the playground.
You need to set up a play date for children to be
together. And guess what, parents say no. She has few
girls at school who accept her. They are more buddies
than friends.
My girl had a depression, tried to develop a bulimia,
to become thinner and a little more popular.
Fortunately we stopped it few months after.
She is diagnosed with the anxiety disorder and OCD. The world
famous Boston Children's hospital was unable to
identify Asperger syndrome in her, even after my
direct question about it. We are with a private
psychiatrist now and feel much happier. She did not
have any health problems before the age of 11, when
she got under the terrible pressure in the middle
school.
It was at the age of 11 when then things started popping up one
after another. First bulimia, then arms cutting, then
seizures, which turned out to be not Epilepsy, but
somewhat stress movements, Tourette syndrome? When I
asked her why she cut her arms, she said clearly, that
the physical pain relieves an emotional one.
This summer we bought a house and moved to a different
street within our town. We found a little private farm
just on our street. The older people who ran the farm
turned out so nice. She worked as a volunteer there
every single day for 4 months, even after the school
started. She is much better spiritually now.
She is much more confident, much more agreeable and
much easier to deal with. She told me just today, that
someone put a note on her locker at school."You are
stupid and you know it". She told me that she simply
threw it out. I am proud.
We had a parent teacher
conference last week, all 7 teachers said: she is very
bright, talks off the topic sometimes, absolutely
refuses to work with peers, the organization suffers,
her folder is a mess. All sounds like a diagnoses and
yet, they are completely unaware. We do not disclose
it at school.
The school's attitude to it is special
needs. We do not want it. Forgot to mention, she sang
in the opera last year and loved it. She sings in the
school chorus now, does the community service, does
the food pantry.
Willowtree is a mother of a daughter with Asperger's Syndrome and a Woman Diagnosed
With Asperger's in Adulthood who lives in the U.K.
I certainly wouldn't have had a diagnosis for my daughter if I hadn't found a private
paediatrician and clinical psychologist to do an assessment. The first Speech Therapist we saw,
who was also private, said that it was difficult to diagnose a girl, but she had 10 years experience
of ASD and she supported an assessment for this. I think she has a child with an ASD, so she was fairly
certain of my daughter's diagnosis. Even so, the NHS paediatrician would not diagnose her.
The private paediatrician had no problems with diagnosing my daughter. I think she suspected
after a couple of minutes of meeting her. I'm not sure what it was (I will remember to ask when I
contact her), but the clinical psychologist said something, and when my daughter replied, something
she did caused both professionals to realise something, and they decided that they would need
to get some additional materials to carry out the assessment, which they had not originally planned
to use.
I decided to home school when my daughter was about 18 months old. She seemed to be learning by
asking endless questions, and by touching things, and I couldn't imagine this working well at school!
I didn't realise that she may have some kind of condition until she was about four. I read a book
about high need children, but it seemed to imply that this improved when the child got to the age of five.
The ballet teacher noticed that my daughter was not paying much attention to what the class was
being asked to do, and she did not seem to be able to concentrate. Apparently, if she was asked to do
something, she might say that she didn't want to, which the teacher said was unusual for a child of her
age. She also generally behaved in a very similar way to a boy who attended a different dance class.
I do think that paediatricians in the system of the National Health Service in the United Kingdom (NHS)
are reluctant to diagnose girls, especially as our first
Speech Therapist said that this often happens. She also works for the same health authority, so it
seems to be a problem. Also, though, I have heard other parents say that the NHS will not diagnose a
child with an ASD until they are at least eight years old. I think it is because it costs the government
a lot of money, especially as a diagnosis will then mean that a lot of money has to be spent to arrange
for a statutory assessment for education. The private Speech Therapist did say that girls are more difficult
to diagnose, though.
From speaking to other parents, I think that school works in a few cases, if the child is found
a place that suits them, and if the statutory assessment process identifies all their needs. Unfortunately,
so many of the children we know haven't got the right school placement, so I am reluctant to send my
daughter to a mainstream school, to wait until her needs have been assessed. In Wales, the education
system seems to be better. Statutory assessment can only take up to three months (not three or more years,
like England!), and many of the mainstream schools have Specialist Teaching Facilities, which are classrooms
with all the extra support the children need. There are also physiotherapists and Speech Therapists at the
school, as part of the education system, whereas in England, these are part of the health service. A number
of home educating families I know have children with Asperger's, and they apparently withdrew their child
from school, since their needs were not met.
I'm not sure if my daughter would be better at school. I'm sure she would like the routine,
and she does like being with other children, but, like her cousin (one of my brother's twin boys),
she does not know when she is upsetting somebody, or when somebody wants to be left alone. If her
needs could be assessed and an appropriate school found, then I think she may do well at school.
Unfortunately, since she has a private diagnosis, this is not accepted by the medical
and education authorities, so she is being considered to have a language disorder, and behavioural
problems. This may mean that her educational needs are not met, if a school place is offered.
However, I received a letter this morning from the NHS paediatrician, which accepts that she has
an Autistic Spectrum Disorder, so this seems to be slight progress.
Odd as it may seem, I was diagnosed privately by the paediatrician and clinical psychologist who assessed my
daughter. They work with young adults anyway, and the psychologist has had a lot of experience with adults,
too. I was extremely nervous about having an assessment, although I wanted to know for sure.
I have always considered myself to be "normal", and in a way, was upset to think that maybe I'm not,
which was something my husband criticised me for, and I hated to think he might be right
( I hope this doesn't sound offensive to those of us with Asperger's - perhaps you understand what I mean).
I have had about a month to get used to my diagnosis. I made the decision not to tell my family, as they have
always thought of me as "odd", and I don't think they would understand. I am certain that it would not be a good
idea to tell my doctor, or the professionals working with my daughter that I have a diagnosis, as
they are highly critical of the way I bring up my daughter. Only a few friends know that I had an assessment,
and they have been really supportive.
I'm not sure what is the most difficult problem my daughter faces, as it changes all the time.
She has eating problems (we are vegans, which causes a lot of criticism from professionals). Recently,
I have been finding that my daughter often touches women's chests, particularly with me and my Mum,
but sometimes other people too. She did this to a ballet teaching assistant once, and I am worried
that she will be asked to leave the classes if she does this again, and it may be a problem if she goes
to school. She finds it amusing, and I've been struggling to get her to understand that it is socially
unacceptable, and that it is not to be done.
I am also concerned that sometimes my daughter hurts herself, and says how "bad" she is, if
I have asked her not to do something. I have been depressed since early childhood, and I am working
really hard to try to help my daughter not to be like this. I also worry about the possibility of school,
since I remember being so frightened throughout my school life, and I don't want my daughter to go through
this. She has always been a generally happy and confident child, and I don't want to do the wrong thing
and change this.
A Parent of a boy with Asperger's On The Intervention of Deescalation
Noelle and her aspie son were interviewed by two behavior analysts.
From their report in tandem with the school her son attends they are making
every effort to model and teach appropriate behavior to Forrest both at home and at school consistently.
Here's an example of home: Logan comes into a room crying and tells me that Forrest hit his arm.
Directly behind Logan is Forrest screaming, escalated, red faced, angry, and yelling that he did NOT
hit Logan's arm and Logan is "telling on him for nothing". At this point, I will ask Forrest to
explain his point of view and he will usually do so in an escalated manner ... tossing in a few swear
words for good measure, and may be so upset that he may lash out again at a wall, push a chair, etc. I'll allow
him to fully complete his side of the story ... and if I begin to "social autopsy" the situation
and the "main view" in Forrest's perception doesn't seem to be going his way he will become argumentative
and become more escalated and louder as his expectation is for me to "get" his point of view and proclaim it
"right". As he is stomping around the room, pushing that chair or hitting the wall .... I will stand thre
and not say a word about his actions. I won't promote nor dispute his actions. I just don't react to
that specific behavior at all. I continue to focus on the intial action of hitting Logan in the arm.
Once he calms down, it is at that time I will make greater progress in talking with Forrest that he
cannot hit the wall in anger and why...and use social stories to show there are other possibilities
as a response he could have made (choices) regarding the original situation and his ensuing response
to his anger (hitting the wall). In his classroom at Summit, no acting out behavior is tolerated and
Forrest seems to "get this" quite well.
It is the rare occasion he will lash out in anger or become violent at school. His teacher, Mrs R
uses a controlled response with Forrest via the same situation I described above. Forrest perceives
a mistreatment, or has his own spin on an interaction with a peer (one in which he is usually right
despite known social acceptance and evidence to the contrary). So when he begins to argue his point
to Mrs R. he is escalated, red faced, angry and yelling. she will look Forrest directly in the eye
and say to him that he needs to calm down and speak to her in an appropriate manner. Sometimes he will
not do this (he's beyond the point in escalation to settle down fast enough), and will continue to
argue with her and use unkind words. She then tells him she will NOT listen to him until he settles
and can use appropriate language (she does this as calm as a clam). And if Forrest continues to argue
his point of view she walks away and tells him she cannot hear him and goes about her work in
the classroom. Forrest, once calmer, will approach Mrs R and ask politely, in an appropraite tone of
voice, and now not as escalated, if he can explain what had transpired. She agrees and they social
autopsy and social story what transpired. My non reaction to a specific behavior and Mrs R's non-reaction
to a specific behavior "should" thus model (shape) appropriate response to feelings of escalation for
Forrest. By reacting to him hitting the wall or using unkind words or using an inappropriate tone of
voice on top of the original escalation can further escalated the situation. But by not responding,
ignoring, and remaining calm we've thus modeled for Forrest he appropriate ways to handle our anger.
And trust me I am angry when he hits a wall or pushes a chair!! But MY response to that action,
acknowleding it let's say, may give it further valor in Forrest's mind. Whereas acknowleding at a
later time when he is calmer and more amenable to discussion regarding that behavior should be teaching
and shaping how Forrest should respond when he is escalated.
Noelle Drumm, Ohio, U.S.A.
Help!
I am a sister of an undiagnosed Asperger woman, age
55. My sister has struggled all her life. Despite a
college degree and intelligence, she cannot keep a
job. She is not dishonest, she attends work regularly,
but loses jobs due to all the AS symptoms, lack of
social skills, misreading social cues,
disorganization, etc.
She is a good person who does
not deserve all the grief she has had in life. She
craves independence and some sense of accomplishment
in the workplace but these have not been possible for
her. She just recently lost another job and with each
termination has more depression and more difficulty
finding other employment.
Our family struggles to deal
with her grief, unhappiness, and her inability to
accept her limitations and try to find other
solutions. She needs, and we need, support to learn
how to live with AS. We also need a diagnosis. We are looking
for help from anywhere.
P.
Family, Relatives of those With Asperger's Share Their Experiences in Response to A.J.'s Questions
P. who has a sister with undiagnosed Asperger's Syndrome shared the following
1)Did you always have some sense that your sister was
different?
We are a family of Mom, Dad and 3 sisters. Our AS
sister is the youngest sister. She was always
different. Very much a loner. Had special things she
liked to play with and did not want anyone else to
join her in play. Totally focused on whatever she was
doing. Took everything literally, no imagination. If
she was told to 'watch that hot chocolate' because of
the temperature, she'd WATCH the hot chocolate and not
try to take a drink.
2) Was feeling different a source of difficulty for
your sister or easy to accept?
She did not feel different. Thought everyone else
picked on her. They were wrong - they were bullies, not her.
3) If she was diagnosed or self-diagnosed in
adulthood what do you think, if
anything would have helped your sister if she'd known at
a much younger age?
She has not been diagnosed. When we've discussed AS
she does not think she has it. If she had had
training/possibly medication, she may have made some
better adjustments in the social arena. A support
group would be most helpful as she thinks she alone is
a failure. Everyone in her family is successful/PHDs,
masters, etc. She is a college graduate who cannot
succeed as a office assistant and other entry level
positions. She is so unhappy and considers herself a
failure. She does not consider the accomplishments she
has made. Those accomplishments however have been in
her special interest areas, flying, running, dog and
horse training. None of which she can earn a living
with either because she is considered too 'odd' or
because there is no earnings potential in that area.
4) If she could find support now as an AS adult what
would you like it to be like?
What kind of support (if any) do you feel she'd
benefit from and why?
She needs to know others are in same
boat with same or similar experiences. Maybe misery likes
company, but also I think she needs to understand that it is a
disease/condition that doesn't mean that she is a failure. Needs
resources re: mental health issues, job retention,
socialization skills, communication, etc.
5) Is she happy and self-accepting? Does she still have times of pain or distress about what AS
means in her life?
She has more times of pain and depression than
times of happiness and joy. She basis all her happiness on
living independently and this is becoming increasingly
difficult with so many failures in the workplace. The
more failures the harder it is to come up with the
next job. Now she is 55 and that adds to the
difficulty. She has chosen to live away from family as
part of her 'independence' but also likes metro areas
and availability of libraries, parks, etc.
6) How does AS manifest in your life for you? Do you
feel lonely? Do you have difficulty socializing?
She is lonely, no friends to speak of outside of family
members. Says she doesn't need friends but in times of
stress says 'I'm so alone." She tries to socialize but
is awkward and dominates conversation with her
interest areas which often are not of interest to
others, exp: Star Trek, dog training, etc.
7) Does your sister have any issues with anxiety? If so, how
does it affect her?
With most jobs she has a 'honeymoon' phase when all
is going well. Once she makes an error or she is told
to improve in an area, she becomes very defensive and
tense. Once that first bad thing happens the downward
spiral begins and she is anxious and tense which
causes more errors/problems and ends in termination
and emotional explosion.
8) Does your sister have issues of sensory over-load? If so,
how do they manifest?
Sensory overload. She has trouble when too much is
going on. Too many instructions, too many options, too
much to do. Creates anxiety and depression and more
mistakes.
9) Was your sister bullied?
She was bullied consistently throughout her school
years including college.
10) Is your sister able to show empathy?
As she has matured she shows times she is
empathetic with others feelings. Other times she does
not appear to recognize others feelings. We have
health issues with our aging parents. After hearing
our Dad was hospitalized she will call and the first
thing out of her mouth is "do you want to go to a dog
show with me?" Other times she calls crying about our
Dad's condition.
11) Is communicating with your sister difficult?
Communication is a large part of her problems. She
does not recognize body language. Will continue to
talk about 'her' subject even when a back is turned to
her. Once she is on the defense she perceives
everything said to her as negative. She will hear a
comment and completely turn it around. Like I might
say 'due to your long unemployment you might have to
consider other options'. She will then tell the other
sister that I said she had to move home with Mom and
Dad.... very frustrating.
12) Does your sister believe that having AS has provided her
with gifts or blessings?
She would say no blessings at all, only grief. She
so wants a career and financial independence and has
not come close to reaching that goal. Basis her life
happiness on this and so considers herself a total
failure. Her few pleasures are in her interest areas,
mostly pets, dogs and horses. Actually she has
accomplished a lot. She has run marathon races(when
running was her interest), has a pilots license and
taught flying lessons(when flying was her interest),
has shown horses and dogs successfully. To her, these
are hobbies and not to be considered successes.
13) Is there anything else you'd like to share
as a family member of someone suspected of having Asperger's?
As a family member of an AS I feel such a weight of
trying to find ways to help my sister find happiness.
It is so very frustrating as she does not acknowledge
she has a disability. She is so bright but so
unsuccessful in the workplace. We understand why folks
don't want to work with her as even family members
find her difficult to be around for any length of
time. She dominates conversation with her interests.
She is not concerned too much with other family
members problems. In fact, she think we have none. We
need help with our parents but when she visits them
she expects to be taken care of rather than the other
way around. We are usually happy to see her go home.
This causes us all to feel guilty.
I am a retired
social worker so have more insight into social
problems and have tried to convince the rest of the
family that she has mental problems, not that she is
just self centered. Our mother has read some
information I have given her on AS and is convinced
that she is a 'poster child' for AS. We frequently cry
over her lack of joy in life and our inability to help
her. It is probably the saddest situation I have heard
of. Individuals with more apparent disabilities at
least get more benefit of the doubt then a person with
AS or a high functioning mental handicap. All I want
for her is some degree of happiness and joy.
as of November 20, 2007
Last up-dated November 24, 2007
November 20/07 -