Tuesday, 25 August 2009
partly learned and partly innate. Depending
on the personality we make friends more or
less easily, yet we do know instinctively how
to make a conversation whether it is about
our interests or weather.
People with autism are born without this innate
ability to socialise. Because a lot of them can't
see the difference between people and objects,
they don't have the urge to socialise, or need to
Before Cirwen was diagnosed with ASD, I found
it very strange, that she would babble more to
her dolls than me. She bonded with me very
strongly, yet she would not allow to be left alone
with her father. He spent the same amount of
time with her as me, he was good for a quick game
of rough and tumble or sharing his food, but only
when I was present. It was difficult for both of us.
My husband hurt when she wouldn't come for a hug
to him, or screamed uncontrollably until I came back
from a corner shop. I could not leave home without
Cirwen unless she slept. At some point it was so bad,
that she sat on my lap when I was in the toilet....
We didn't know why and we didn't know how to
deal with it. Then she started a pre-school for
three hours a day and slowly, but not without
initial screams and tantrums, she learned to let
go of me. She engaged in play with other children,
although most of the time she would rather play
During snack times, she preferred to sit in a corner
on her own rather, than at the table with the others.
The pre-school teacher was the one, who picked up
the signs and filed for assessment.
The diagnosis came a year later when Cirwen was
just over 4 years old. From here things went
easier for us, as we found out the reasons and looked
At school, Cirwen quickly made friends with a girl
from the neighbourhood. Yet, when we invited
another girl to play, she became a bit irritated.
I noticed, she could play with only one girl at a time.
Having both of them confused her and she didn't
know how to divide her attention to two girls
in the same time.
When she became more vocal, we started to teach
her how to have a conversation and keep it on track.
She had to be taught, that she has to give
someone a chance to answer her question, or to voice
their opinion. We had to explain to her, that she needs
to keep on topic if the other person is interested in
pursuing it. Cirwen had to learn to let others talk
about things they are interested, even though it's
not her favourite topic. Taking turns and learning
not to interrupt others was the most difficult for
her to take in.
Autistic mind is very self absorbed, therefore
consideration of others is not an innate need or
Now, Cirwen is able to converse, yet still finds
it difficult to have a small talk and to wait her
turn to join a conversation. As she once said:
"What's the point of talking about the weather?
Everyone can see if it's raining or not!"
She is now strongly bonded with her father and
is making up for the lost time, becoming the
Cirwen has learned to interact with larger group of
children as well, which makes her social life much
easier. There are still many things she needs to
learn about people, but I'm taking it slowly, as the
issues arise. Theory is not her strongest thing as
Saturday, 22 August 2009
many problems for people with autism is
hypersensitivity. What is it? In simple words,
one or combination of senses is doing overtime.
This can cause not only allergic reactions, but
also behavioural and psychological problems.
There are many examples. I have heard of
a girl who could not stand certain colours. Her
parents redecorated the lounge and painted it
terracotta. The girl could not stand sitting there,
because as she said: "the colour was scratching
Cirwen is hypersensitive to certain sounds and
touch, maybe taste (last is still not confirmed).
Low,humming and very high pitched sounds are
seriously hurting her. She gets very upset, and
often says they are "giving her a headache".
Touch. She rarely wears jeans. The fabric is usually
too stiff, or the trousers are too tight, therefore
not comfortable. Most of her tops, have their labels
cut off because they are irritating. Cirwen wears
only cotton and other soft fabrics, where the clothes
are not skin tight as she finds them very uncomfortable,
Taste, I suspect, that she might have heightened sense
of taste, however it hasn't been confirmed by any
authorities. I just think this might be the reason of
our food problems...
Cirwen has been described by the occupational
therapist as "sensory seeker". This is not so good.
It means, that she is kind of addicted to the sensory
stimulae she experiences. She will pursue the feeling,
or sound until she can't take it anymore, and she
crashes. When she was younger, it would demonstrate
in tantrums; now she will be withdrawn, angry or very
I can see it often. She loves her own voice. Cirwen,
even when she couldn't utter words, always was
bubbling away to herself, always singing. Now, she's
11 I can hear her still talking to herself, making strange
noises while playing with her brother, singing, making
voice impressions till she has a headache or shuts
herself in her room. Very often, on parties, I've seen
her sitting with her ear plastered to the booming
speaker because she likes the sound and the vibrations.
Cirwen always had to touch things before she put
food in her mouth, any new object had to be inspected
by her fingers. New clothes, toys, even furniture is
accepted or rejected not only by their looks or colours,
but how they FEEL TO TOUCH.
You know, sometimes, when our kids are ill or scared
at night it's a natural thing for parents to take them
into the bed for a night. i never could do that with
Cirwen. Instead of settling down to sleep, she would
start to explore her parents. She would stroke our
faces, stick her fingers in our ears, noses, try to open
our eyelids or mouth. Pull gently or stroke our hair...
It was impossible to fall asleep! Now she's just too big
for that :-)
There are desensitisation therapies for dealing with
crowds and sounds, colours and so on. Many have
benefited from them. I, however, was told that since
Cirwen is the "seeker" it will not have much effect on
her. The therapy may dim the stimulae, but will
not get rid of the desire to experience. Therefore, the
advice is "Live with it!"... So we do...
Monday, 17 August 2009
they will become? Will they have a career? Will we have
grandchildren? Will they be happy?
For us, parents of autistic children, there are more questions.
Will they be able to live independently or will they have
appropriate support when we are gone? Who will look after
those who need 24/7 care? Will they be able to maintain
a job? Will they be able to maintain a relationship? Will
the society accept them? Will they still have to fight for
their rights? I could probably list many more of those
questions and worries.
I decided however to post a link to the last Sunday Times
article written in favour of the new social care Bill which
will be read for discussion in the House of Lords.
This article gave voices to those adults who suffer from
autistic spectrum disorders and parents of those who
cannot speak for themselves.
I keep trying to make my blog as positive as I can, but
I never said it's easy and I do remember it can get worse.
These people have explained to me many things I still
couldn't understand about Cirwen. Enjoy:
Sunday, 16 August 2009
devices to tell it's passing. The watches, the clocks,
with different faces, digital, and so on. We use the
types we feel comfortable with.
I do not know if it is an autistic trait or not, but my
daughter cannot embrace the whole idea. Hours,
minutes and seconds... seem to her incomprehensible.
I have tried to teach her and explain time after time
how long is an hour, that it consits of 60 minutes. etc.
I used clocks, videos, fingers, cards and books. Still
I keep looking for more resources and new techniques,
but to be honest, am rather frustrated and concerned.
Being 11 and moving on to the secondary school, planning
for more independence - she has to know how to tell the
time! Once the new friends find out she doesn't know
how to read a clock, they will have another reason to tease
I am sure, we will finally find the way to teach her. But when?
How? I don't know...
Time is an abstract. You can't touch, smell or feel it. It must
be difficult to comprehend it's nature for someone with
a very hands-on, practical mind...
Tuesday, 11 August 2009
by National Autistic Society. They are the most
outspoken charity in Britain working closely with
the government as the advocate for people with
"The Government's Green Paper on social care reform, published last month, mentions the possibility of moving some disability benefits from being a cash benefit and incorporating it into social care funding, administered on a person's behalf by a local authority.
The NAS will be responding to the Green Paper. We will produce a summary of how the Green Paper proposals could affect people with autism.
We want to know what you think of the possibility of Disability Living Allowance (DLA) being integrated into social care funding. This will inform our official response to the Government. To let us know your thoughts, email email@example.com
This message is from The National Autistic Society (NAS). The NAS randomly monitors the content of e-mail messages sent and received.
Any opinions contained in this message are those of the author and are not given or endorsed by the NAS unless the author is clearly stated to have authority to bind the charity, and this has been duly verified by e-mailing firstname.lastname@example.org
The NAS is a company limited by guarantee (No. 1205298) registered in England and also a charity registered in England and Wales (CR269425) and in Scotland (SC039427), its registered office being 393 City Road, London, EC1V 1NG.
This is the text of my response to this:I would like to voice my concern about the prospect of turning the DLA from cash to a fund towards the social care funding. For children like my daughter living in Bristol area it would be a complete disaster. My daughter is an 11 year old with ASD. Being on a milder end of the spectrum means she does not qualify for SEN statement as well. There are no facilities in the area disigned for young autistic children at all. The only teenage group is situated on the other end of the city which is for 16 year olds or over, therefore she cannot go there yet, or she won't when she can, because of the vicinity, as I do not own a car and public transport may be frustrating.
My daughter's DLA is used, by us, parents, to make sure that we can provide her with extra materials for her education (to keep up with curriculum) and her social education within her age group and interests. Incorporating DLA into social care funding on her behalf will mean that it will be spent on facilities she is not illegible for, or she would not be able to use, because it will be out of our reach. Please feel free to search for suitable facilities for children 11 and over in South Bristol - you won't find any - as the Bristol City Council puts their money where it already is (Hartcliffe - scary place to go, or North Bristol ).
Please do not let this happen.
Wednesday, 5 August 2009
is providing them with the balanced diet. Many
autistic people, however, suffer from multiple
food allergies, which not necessarily manifests
itself as a visible rush. Allergies can cause many
behavioural problems like hyperactivity, head
aches, restlessness, irritability even aggression.
For many autistic people food must agree with
their hypersensitivities or a form of OCD. I know
of many who will not mix certain parts of the meal
together, or will not allow them to touch each other
on their plate.
Sometimes it is just an idea of trying a new dish and
you have a hungry child who is not comfortable with
the unknown; taste, smell, texture...
I am always struggling with making Cirwen eat.
When she was smaller, around the age 2 - 4, very
often she would eat only the food she liked the
look of or was related to her Barbie and Princesses
obsession. Well, I even made the mash potato look
pink but it didn't work - she just doesn't like them
She went once through a whole week living only on
jelly and a bowl of boiled vegetables. My GP said
it's OK, as she had "some nutrients" in the veggies.
I have tested her for some food allergies, but all
what she was tested for came out negative, so I was
told to feed her as she craves things. This way she
goes through the periods of eating one type of food
and then changes for another. It can be tons of pasta
one week and then fish almost every day next.
She still will not eat potatoes in any way you cook it;
fried, boiled, mashed, chips, roasted... no, yuck!
Similar situation is with bread. She would have
a toast for breakfast at times, sandwiches for her
packed lunch, but now she won't touch it.... Bread
seems to be acceptable only in a lunch box.
We also have a problem with meat. She will have
chicken, bacon and ham. She will eat red meat only as
burgers, or with spaghetti - another words - minced.
Cirwen also is very fussy with fruit and vegetables.
Grapes, apples, some of the berries. This again
depends on the texture more than taste. For
example: raspberries are "hairy" and bananas have
similar texture to potatoes... She does like strawberry
flavoured dishes, but will not eat a fresh strawberry,
because it's got pips...
I was very happy, when she discovered kiwi and
loved it. I thought, great, one of the richest fruit,
packed with vitamins! Well, my hopes of adding
new ingredient to my daughter's diet faded rapidly
the next day. She was covered in an itchy rush
from head to toe...
Then come e-factors, which aren't good for any
kids. Autistic child may have an increased
reaction to those. So as Cirwen, therefore we
avoid many sweets and drinks.
This way I often cook something for the three
of us one dish and for Cirwen another, separately.
It's not convenient, but I prefer she eats something
rather than sit for hours in front of a plate of cold
food she thinks is disgusting. (This happened to
me, so I know how it feels...)
We have however an agreement maid recently,
that she will try a new dish at least twice. If she
doesn't like it both times, we won't attempt to
convince her it's good again.
I must say we both stick to it. She will try and
honestly voice her dislike or pleasure. That's one
good side of an autistic mind (in this case).
Honesty. Because the desire to please people is
either non existent or rather low, an autistic
says what she feels regardless of social etiquette.
Things are black or white. Nothing in between
so lets say as it is, to the point.
I struggle sometimes, and visiting family and
friends for dinner can be awkward, but what
can you do?
Sunday, 2 August 2009
My comment posting is finally recognised
AND FIXED! Thank you my genius hubby!
Not only it was the case of "mobile" internet
issue, but also my privacy settings, which
meant I was not recognised as google account
user on any (even my own) pages.
I've been suffering from withdrawal...
Thank you all who have stayed with me