JUST JUSTICE-ITS THAT SIMPLE!!!

Dear All,

I was struck very much by the fact that some people didn't really understand
what it's like to have a child with Aspergers.

If the piece I wrote below (it was written just for me, to let out some
feelings, inner conflicts) sounds like a wallow in self pity - well I
suppose it is!!

I am posting it as I think although it is far from comprehensive as to
everything that's happened to us and all the reasons and views, and things
have changed since, as have some of my views etc, I still think it might
help people understand a bit more.

I'm just a Mum.

Feel free to use or delete.

Pat.


You have no idea

It is the year 2002. A magic, futuristic number, now achieved just by having
survived thus far.
Yesterday we dreamed that the world would be a better place, where all those
who -  through no fault of their own  - would otherwise fall by the wayside
of the mainstream would be supported, and attempts made to meet their needs.

We know better today.

It was a windy, overcast but mainly sunny day during Eastertime.
My daughter and I were walking to the local park for a reunion of her old
primary school “classmates”. These days they are in year 9 of “seniors”, at
different schools.

I had seen one of her old classmates, and she had told me about the reunion.
I was pleased on my daughter’s behalf, and made a very positive and grateful
response.
I was surprised that she had asked. I had the same “old anxiety” about it,
things might be tricky, but I tried to look on the positive side.

My daughter was extremely nervous and anxious before the reunion, but
nevertheless, I kept up the encouragement to meet up with her old
schoolmates.
She had known them since infants’ school. They inhabit some of the same
school class photos.

We reached the park at one o’clock, and waited, and anxious that we were in
the wrong place, my daughter rang on her mobile. They were nearly at the
park and would be a few minutes. About fifteen minutes past, they arrived in
a small group, obviously having met up together first before meeting with my
daughter.

We saw them at a distance and began to approach them. They slowly walked
towards us. I was full of hope that this would be a good day, perhaps a real
new start, and become a treasured memory for my daughter.
I would take my leave of them all when I had found out from them all what
time I would need to collect my daughter.
We stopped in front of them.

In the instant of recognising negative body language, I felt as if I had
been hit by a lightening bolt of dreadful realisation. I knew in a moment
that bringing my daughter had been a huge mistake. I felt the aftershock of
a despair completed, any hope quashed, and in a strange sense, which I will
explain later, vindication of myself.
“Hello” froze on their lips, and they did not speak. They looked down,
sideways glancing at each other, whispering slightly, would not meet my
daughter’s eyes, and by association, mine neither.
My daughter tried to make conversation, to reach out to them. “How are you?”
she said.
I heard a couple of half-hearted mumbles in response, but it was very
apparent that it was hopeless.
I knew that my daughter was now completely out of step with and left behind
by them.

They all looked confident, at ease with their everyday world. Streetwise,
and (on the surface) self-assured, socially competent, something my daughter
will never be.
She had never been in step with them or really a part of their world, ever.
They were aliens to her. My daughter (and therefore myself), were aliens to
them.

I knew she had seen their reaction. She has studied enough books on body
language. I knew the humiliation and rejection she must be feeling (again)
but was unable to voice there right in front of them. I was anxious about
what her reaction would be later. (Hitting herself on the head, screaming /
growling, throwing things, slamming doors repeatedly, etc.)

I felt rejected and humiliated too, for her. I had a strong feeling of déjà
vu.
I felt like crying, but I also felt very angry, perhaps with myself. I felt
as if I had exposed my daughter to hurt and rejection all over again. I had
effectively “set her up.”

Yet I tried to understand their point of view. My thoughts whizzed around my
head. Try reason and understanding. They are not unfeeling girls, they are
young and cannot understand. Yet they surely could not have just felt very
awkward, and at a loss? But they did not even try to “reach out” to her.
I suppose they did not know how.

I thought: “Maybe we’ll try and meet them again when they are eighteen or
nineteen and perhaps a bit more understanding, open, and tolerant.”
But within that moment, in that place, in front of them, I couldn’t very
well say “OK this is a mistake. I’ll send you some information for you to
read about autism spectrum disorders so you might understand. We’ll be back
to try again in another four years, and hope society will have become better
informed and more understanding by then. See you”.

I couldn’t just yank her off home with me. Not polite, not the done thing. I
knew I would have to leave her with them in the park at that awkward moment
in time, and hope for the best, hope for their tolerance and understanding.
Hope that some are strong sensitive individuals who do not mind what the
others think of them, should they show compassion, acceptance, and “reach
out” to someone “different”, whom they don’t quite understand.

They all looked like young teenagers, dressed like teenagers, they wore
fashionable clothes and were skilfully made-up, one with colourful dyed
hair. They were a bonded group. They were in tune. They had a silent
understanding. They were COOL.
I tried to start a conversation with these girls, whom I had known so well
as bouncy innocent, enthusiastic naïve junior aged girls.
“It’s nice to see you all again”, I ventured.
Awkward silence.

“Why? What was going on?” You may ask.

Did my daughter and I have toilet paper stuck to the soles of our shoes?
Were we wearing our underpants over our trousers? Did we slobber, gibber or
dribble?
No.

My daughter has Asperger’s Syndrome. She is very intelligent, but has
autism, a subtle impairment of communication and empathy, and there are
associated behavioural difficulties, and “quirkinesses” of character. It
affects her and will affect her every day of her life.

My daughter’s difficulties are invisible, little understood, even by the
“experts”, (actually not at all by many of them). The problems we experience
as a result of them are outside most people’s everyday experience. Other
people don’t have such worries at all, but parents of children with autism,
have these worries and the related stresses every single day. Our children
and our fears for them are in our minds “24/7”.

As a family, we are controlled by the invisible constraints my daughter
unwittingly places upon us, in an effort to reduce the uncertainties of
life. We tread on eggshells every day around her. I spend my days trying to
keep her on an emotional and behavioural even keel.

Back to the park.
To give them their due, the girls tolerated my daughter’s presence for a
couple of hours, but I think that we very much spoiled the easy enjoyment
and relaxation of their day in the park, just by showing up. It’s not nice
to think of your child (and yourself by association) as a Party Pooper or
social miss-fit.

While I waited anxiously, (I was even more anxious about it now), with
another Mum, (a “normal” mum) my daughter sent a text message to my mobile.
“I’m bored, what shall I do”? Obviously no real connection was taking place.

Apparently during the afternoon another girl had arrived, and hugged
everyone there – apart from my daughter.

I felt as if the alienation was complete. I should have known not to hope. I
should not have taken her, setting her up for this rejection, humiliation,
and huge disappointment. I feel guilty again. This is one of those moments
where I feel like taking us both off somewhere and shooting us both, for
this is a confirmation of her utter alienation from the mainstream.

She had been in her own silent little world, and a stranger to the rest of
the family, after leaving the non-stop screaming of her babyhood behind. I
felt something was very different about her, even in the first days.
Not just different from her sister, but different, somehow distant. I held
her in my arms as a baby, and looked down at the still, faraway, smooth doll
face. This baby so reluctant to feed and take hold of life. Getting her to
feed was a struggle. From then on, I was drawn into caring for her, adapting
to, and making allowances for her subtle, hidden, off-beat and quirky ways.

There were countless odd, often indefinable or subtle, little things. She
used to hold little toys up close to her face and look so intently at them,
she used to go red, almost cross-eyed, and tense / scrunch her whole body up
in excitement or concentration, and making little squeaky noises.
Caught on video, constantly screaming as a baby. On her birthday, also
caught on video, taking the silver foil cups from all the Bakewell tarts,
and placing them carefully on the table beside the plate. Totally
uninterested in the tarts, but looking intently at the foil shapes. Playing
with a bowl of jelly for hours.
Caught on video, she silently wanders around as a toddler, in her own little
world, often appearing not to hear me but sometimes she smiles at me when I
call to her. How franticly, in retrospect, I am trying to get a response
from her, to interact with her. I am repeatedly calling to her, singing to
her, showing her toys etc.
She wound string “pulleys” around the door handles with little toys tied to
them, making them go up and down. A preference for little toys or toys with
long dangling legs. No doll play.
She was uncoordinated, for example, if she were holding a cup of drink, she
would drop it if I called her name, so she used toddler beakers for many
years.

She had started infants school at the same time as the other girls. I was
still having to push her around in a pushchair, (which was embarrassing –
the other Mums might think I was being silly or far too protective) because
though she could walk, for some reason, she couldn’t walk all the way to
school. I remember being along a road, thinking: “She should be able to walk
this”, and carrying too much shopping to be able to carry her too, and she
was screaming and screaming because she wanted to be carried.

My worst suspicions and fears were confirmed when fairly soon after she
began school, I was called to meet the head teacher and my daughter’s class
teacher, and they gently explained that she needed to be assessed, and that
they were going to begin the “statementing” process.
This was one of those rare times on “our journey”, that we actually received
understanding, sympathetic concern and co-operation from a school or other
expert.
She had to be to be taken out of lessons (once a week) to see a speech
therapist, because she was not producing language.
When I had seen her in class with the other children, it was as if she was
doing her work alongside but not with the others. As if the others were not
there. She did not reach out to them and they did not know how to reach out
to her, even if they had had the awareness at that young age.
She left mainstream school after just a couple of terms to attend a language
unit.
She was diagnosed with “Semantic Pragmatic Disorder”, and with a three year
language delay, but of course no one raised the possibility of autism.
Heaven forbid a parent like me should be informed of anything that might
cost the LEA more money.

My daughter received regular speech therapy and the language unit actually
did a wonderful job in helping my daughter to open up, understand more of
the world, and communicate. At last, she was no longer a complete little
stranger to us.

After a period of time in the language unit, my daughter was able to express
her feelings, talk about things that interested her etc. I felt more hopeful
about the future. (How could I know what struggles lay ahead.)
Yet there was still the pressure on me for her to leave the unit as soon as
possible, before she was really ready and equipped to cope with the
mainstream world of school.

Even the Headmistress of the Language Unit had said to me, (when I asked for
help with the understanding of and dealing with the tantrums and other odd
behaviours at home); “Have you tried telling her off?” She should have known
that I was asking for help with “different” behaviour, not deliberately
naughty or bad behaviour.
(My daughter still hits herself on the head today, when upset and anxious,
and feeling rejected. She sort of “lays about” her own head. Nobody seems to
want to help or knows how to help with this.)

When my daughter had started the language unit, I left my job. I felt a
terrible guilt, about having worked up till then. Could I have been in some
way responsible, and neglected her because of working? Yet my other daughter
does not have these problems.
I have felt a terrible guilt about having to be home to support my daughter,
and not having worked since then. You cannot win, even with yourself.

I have felt a terrible guilt about having to neglect my older daughter – all
my energies and attention have had to go into caring for my younger
daughter. My older daughter has had her own problems, (continuing asthma &
eczema, and allergies.)

Most of my energies have had to go into my long and totally exhausting
“career” as a parent of a child with a hidden disability – as with other
parents of such children - as a fighter of the LEA, the DSS etc. for every
little thing.

I gradually learned not to trust anyone but be on constant “bullshit alert”
with all experts and professionals, the “Gatekeepers” in other words.

I would think to myself; “You have no idea”, when dealing with an expert,
filling in a form, or even just telling a friend about what it was like to
deal with.

I tried to get help for my daughter’s behaviour and social problems from a
child psychiatrist, but was given photocopied sheets on discipline. I asked
for a second opinion (see next page).
These quick sentences here, read in the space of a few minutes, do not
reflect the time involved – months of waiting, trying to find out
information etc, Hundreds of wasted, futile, hours on the phone, nor the
terrible isolation and stress for her and the bleakness, dismay, sense of
lone struggle, and stress for me.
I returned to the same psychiatrist three years later and she apologised for
missing the diagnosis, (she said that the criteria for diagnosis had
changed), and she referred my daughter to an autism assessment / diagnostic
centre which did eventually diagnose Asperger’s Syndrome.

At this time, this child psychiatrist was leaving her post, (frustrated by
her employers, telling me in confidence that they “did not care about their
patients”,) so we did not get a proper report or support, and to my
knowledge her post is still not filled, about three years later. Did we get
a diagnosis only because she knew she was leaving?

We had been blatantly lied to by the “second opinion”, another child
psychiatrist, whom we travelled to another district to see. There were
notices up in his waiting room to the effect that the service he worked
within did not believe in “labelling” children – not a promising sign.
He also insisted we spoke in front of my daughter about her difficulties. We
were not comfortable with this, as it might upset and embarrass her. Against
my better judgement we went along with it. She sat there throughout the
session with him, pulling her coat around her. She would not hug me
afterwards. She still does not hug me much now. It was a watershed. I felt
like a Judas.
After that ordeal, he added insult to injury by writing me a letter saying
that my mother and I were; “pressurising her into a diagnostic category”. I
merely wanted a second opinion, and secondary diagnosis, in order to get the
right support for her. Secretly to fellow professionals in a letter I
managed to get hold of under “access to files” legislation, he said that she
showed some signs of having Asperger’s Syndrome, but that it was not a
“full-blown” case.
At the “consultation”, he had read out of a little book, and asked does she
do this, and does she do that, like a crude checklist.

While attending the language unit, they had referred her to be investigated
for epilepsy, as she was often so deeply in her own little world. She had an
EEG. It wasn’t epilepsy, but she did have the brain wave trace of a child
three years younger, which reflected her language / developmental delay.
(More electrical activity on all of the trace lines.) The specialist told me
that she would catch up eventually.
(Autism is considered to be a long term developmental delay. The
presentation can change over time.)
A friend’s daughter who attended the same language unit and with the same
diagnosis of semantic pragmatic disorder, has recently begun to have
epilepsy. It appears to be something to do with a person’s “wiring”.

When my daughter returned to year 4 of her mainstream junior school, to be
reunited with her peers, she tried out the newly learned strategies and
approaches learned at the language unit – taught to her in a literal way -
on her classmates. I watched at the edge of the playground, trying to keep
out of her view. Hoping with all my heart. A conversation would appear to be
sustained for a short while, but then they would slowly drift away from her,
one by one.
What is going wrong? What invisible thing is at work? I wondered to myself,
watching, at a distance. She would trot back to me, “Why are they all
leaving me?” I would wait with her till the bell.

I cannot over-emphasise the subtlety of this difficulty. “Subtle” meaning
extremely hard to pin down and define, and not obvious, rather than “subtle”
as in negligible in its effect. In its effect this hidden disability is a
complete utter disaster, almost a lifelong curse for the individual. This is
not an exaggeration. I am just another ordinary Mum, feeling the pain of my
child’s exclusion from and lack of support within society.

I know of some Mums of children with Asperger’s Syndrome who are now very
ill, (cancer and heart problems) because the stress is continual and
unrelieved, although you can have good days and bad days.
The stress has been overall, continual, relentless and many faceted.
Carers experience stress because they have to care for their child and cope
with the everyday behaviour and demands, and different style of thinking,
reasoning, and reactions, and try to remain sane. The carer has to reassure
the child after they have been rejected or misunderstood by other people.
The carer has to research and fight for every little tiny morsel of support.
The general lack of knowledge and understanding of these difficulties means
the child and their carer are somehow not part of society, and they cannot
access support.
The carer is perhaps not able to work because of both the practical and
mental demands, and thus have little money. They live in dread of what the
future will hold for the child when they are no longer there to support,
accompany, and interpret the world etc. for them. Carers can feel
frustrated, thwarted, stuck on a broken record, life-sentenced, and cursed
themselves.

Those that you approach for help deflect you away, deny, blame, etc.,
because the money and services are not there, so you feel they would rather
that you crawled away with your child and both died. They pile on additional
stresses (see later.)

A carer can make hundreds of phone calls and get nowhere, because there is a
complete lack of understanding and support “out there”, and yet our children
are pushed into mainstream schools, with no support, and forced into feeling
like oddities and failures.

In mainstream junior school, the others girls had never understood my
daughter, but at this time tolerated her presence alongside them. She even
went to one or two parties, had a couple of classmates back home to play,
but it was always awkward. She tended to associate with either shy
thoughtful sensitive girls, or girls who were also “not of the mainstream”,
girls with their own difficulties, and therefore tending be left on the
outside.

I have often thought that teachers in schools are missing an educational
opportunity with this. Why can’t they discuss difference, individualism,
relationships, talk about tolerance, in general terms?

Schools now seem to be impersonal academic sausage machines, the grinding
handle being pushed round faster and faster in the attempt to produce a
product - competitive league tables. In such an atmosphere, an “Aspie”
stands out a mile, like an awkward lump of gristle.

My daughter coped with junior school, academically, till the beginning of
the last year (6), because in years four and five, she had two kind teachers
who, without having any understanding of language disorders, as instinctive
diligent teachers, kept her close by their desks, and checked her
understanding.
In her final year, she was unhappy at her ongoing lack of friends, and
because of mis-communication. My daughter needed to be able to get away from
the playground to a quiet area to recover herself, to have little spaces of
calm and quiet - in effect “mental health breaks”, to help her cope, to
stave off panics. This was not allowed.
Her class had a new somewhat arrogant teacher who shouted at the children,
and who seemed to be “putting the pressure on” the whole class, probably
because “SATs” were in sight. Other parents were not happy about her manner
with the children either.
In conversation with the teacher it was apparent she knew nothing about
language difficulties and she didn’t seem to care.
To my dismay and shock, the phrase “This isn’t going to work”, had to enter
my head.

My daughter had not been properly monitored in the school for some time,
even though she still had a “Statement of Special Educational Needs”. This
meant in effect that there was no expert information about her on which to
make assessments of progress or detect any problems, for her Annual Review,
or for making informed appropriate decisions.
Not one of her teachers knew about language disorders. The possibility for
useful feedback between myself and these teachers did not therefore exist.
I was not an expert on language disorders. I am just an ordinary Mum, so the
LEA thought it would try and pull the wool over my eyes and close her
statement, to save money.
Her statement was closed against my wishes with the words from the LEA rep:
“If you don’t agree to it we can close it anyway.” The headmaster (of a
church school,) colluded in this pressure, which in retrospect, I do not
think I can ever forgive him for. The educational psychologist was not
there. (She had, I heard later, left because of having a nervous breakdown.
I don’t know if this was true or not, but she couldn’t be there for us. She
had previously recommended that my daughter keep her statement at least
through juniors.)
My daughter’s class teacher tried to justify it with: “she is reading
beautifully and with expression”. At the time, I did not know enough about
language difficulties / autism to be able to ask; “Yes but is she
understanding what she is reading?”

The community speech therapist my daughter had been seeing told me she “no
longer had” Semantic Pragmatic Disorder. She didn’t tell me, and I didn’t
know, that if your child has an autistic spectrum disorder such as semantic
pragmatic disorder, it doesn’t go away. Autism wasn’t even mentioned.
Nowadays, a diagnosis of SPD is often a diagnosis of an autism spectrum
disorder.
(Why do so many professionals appear to collude in denying a child support?
Why is the invisibility of such a disability used in this way? How can these
professionals live with themselves?)
Yet I knew things were still not right. Those odd behaviours, the lack of
friends, the impatience, anger, terrible “tantrums” (or panic attacks?) 


On the other hand, a community paediatrician told me after this that my
daughter “still had semantic pragmatic disorder”, and that “it was not
Asperger’s syndrome”. He suggested a reward system to encourage “good”
behaviour. This wouldn’t work, because when in a tantrum, my daughter will
throw things that she needs or values, and even hit herself.

There was no one either able or willing to help us, or inform us. Finding
out about anything seemed to depend on chance or luck.

My daughter was treated for her posture and gait problems by a NHS
chiropodist.
On being asked what my daughter’s problem was, she described my daughter’s
physical problems as “clumsy child syndrome”, (which apparently, I heard
later, translates in other areas of expertise as “Dyspraxia”, which is often
associated with Asperger’s syndrome, and which covers problems with
language, co-ordination etc).

I moved her to another school. I was very shocked at myself for doing this,
because it had never happened in the family before, and it felt a bit
high-handed, or rebellious. I did not want to have to do this. I believe in
education, and love learning. I felt it was necessary, and that I had no
choice.

My daughter tried hard to “make a go of it” at the next school, and the
Headmistress called in an educational psychologist (for that school) to do
some tests. He did some tests with her for about half an hour. The
headmistress called me in subsequently and practically told me my daughter
was a genius.
Perhaps I should have been happy, but I was very very perplexed.
Tests can be spurious, depending on the necessity, reason or motive for, on
the circumstances under which they are taken, on repetition or selectivity
of types of test, etc. Test results can distort the picture. The results can
be used as a justification. “How to lie with statistics”.
I know my daughter is very able in some areas, which these tests confirmed,
but, they only gave half of the academic picture. She would have scored very
low in some other areas, but these were not tested for in this instance.
They also did not pick up on her social and communication or behavioural
difficulties at all. They were not intended to. This would save money.
On the one hand I was pretty chuffed at her ability in these areas, yet on
the other hand I knew that they did not pick up on her lack of ability in
other areas, and her social difficulties.
(Tests done by a university study team later showed the significant
discrepancies in her scores, typical of someone with Asperger’s Syndrome. I
am talking of scores as different as 90 and 2.)
What good is intelligence if you are constantly anxious, cannot cope in
school, have no friends, and are rejected, spurned by some people in a very
obvious way?

My daughter was again unable to make friends at this next school, and was
called an almost impressively substantial collection of names, so I took her
out of school completely till it was time for senior school. My version of
“home education” or “education otherwise”, was to continue with copies of
the same school workbooks, use additional project folders, and take her to
Kumon maths, plus to yoga, badminton, table tennis, & trampoline.
I chose yoga instinctively rather than other physical exercise, because of
her need to be able to calm down, and because of her physical problems –
tight versus lax muscles.
She lasted one and a bit years at senior school, but it took a further toll
on her emotional well-being. Her anxiety showed in her attempts to control
things minutely and precisely at home, and in temper eruptions / panic
attacks.
There was a total lack of understanding / comprehension of her difficulties
from the senior school staff, plus an additional smug “we know best”
attitude, when they actually knew and understood very little. Although
“educators”, they didn’t seem to want to learn anything new themselves.
This senior school provided the least possible support. The SENCO seemed to
resent parents contacting her. The school was more concerned with league
tables and reputation than the welfare of individuals. I was told that my
daughter was a “model pupil” at school, and they seemed perplexed at my
accounts of her problems at home. I described her behaviour on returning
home, or when she could not understand what to do re: her  homework, and her
feelings of isolation and difference.

At home, she would throw her books and other objects, stamp about, scream,
hit herself etc. To the school, this was my problem, not theirs. They told
me that I was fortunate that things happened this way round, so that she was
able to study at school. The emotional damage on her did not appear to be of
consequence to them.
I asked if her homework could be explained more / clarified. (Since she left
I have heard that they now do this with children with special needs. Too
late for us).

My daughter’s class teachers (who were mostly helpful and approachable,
although they  did not have the direct responsibility for co-ordinating or
implementing “support”), were given little yellow sheets on how to deal with
each child who had difficulties, but were not told of the name or nature of
the exact difficulty for each child, so they could not attempt to understand
the precise problem, and possibly adapt their methods to deal with such a
child.

The SENCO was totally appalled at my informing my daughter’s subject
teachers at parents’ evening that she had a diagnosis of Asperger’s
Syndrome.
The general response from these teachers had been positive - “Oh, I thought
there was something”. They found being told useful.
It made common sense to me, to tell the teachers, so they knew what they
were dealing with. However the school special needs policy appeared to be;
“hush it up”, “act normal, don’t acknowledge a difficulty”.

The Educational Psychologist did not himself observe her in school. He sent
in an assistant who said that there did not appear to be anything wrong in
class. My daughter’s social problems would be most obvious in the
playground. There is also a phenomenon amongst bright autistic people called
“guest mode”, where they can “keep the lid on” in formal situations, but it
comes off – well and truly - at home.

The SENCO said later, (when it was far too late, and my daughter was
refusing to attend school any longer), she did not do “Circle of Friends”
with my daughter; “Because her tutor group are immature and spiteful”. If
this were really the case, I do not know why my daughter, with such a social
disability, had to stay in such a group.
This general observation says a great deal about the general school attitude
to pupils. A strange, vague and complacent acceptance of children’s negative
qualities at that age.

The senior teachers had told me that had experience of children with
Aspergers. Their neglect of her needs did not bear this assertion out.

My daughter refused to attend school for many months. I feared legal action
(it was just before Christmas, which somehow made it worse) by Education
Welfare, whom I had approached for help, myself. I was told this would
include a criminal record and a £2,500 fine.
I know another Mum who lives in a nearby London borough. The same thing had
happened to her, when her “Aspie” daughter refused to go to school. This Mum
was threatened more than once. She is one of the most kind, mild, loving and
concerned people you could ever wish to meet. She has been very ill with
cancer, and most probably worried about her daughter’s future possibly being
without her. She could not even get temporary transport for her daughter to
college.
I know of other Mums in the same position as us who are or have been ill
with life-threatening conditions. This is the price society inflicts on us
for having had a child or children with Asperger’s syndrome or similar.
When there is little money, and priorities to be decided, invisible
disability is a useful way to save money. Blame and deny.
We are a potential drain on society’s funds, so we are blameworthy outcasts.
Even if no one actually says or means this, this is the overall message we
surely get, from the way we are dealt with.

Some time later, because the child psychiatrist at the Family and Child
Consultation Service was not replaced, we were allocated a social worker.
She had first-hand knowledge of ADHD so she knew what “different” behaviour
was like for parents to cope with. She really understood. It was like having
a good fairy or guardian angel.
With the best of intentions, she helped get my daughter in an “integration
unit”.
This social worker left the service because she was unhappy with the way the
CFCS was being run.

I was repeatedly told by the Manager of the Integration Unit that my
daughter could not stay there permanently, and they were not teaching her to
anything like her level. She was bored, frustrated. I felt that for no fault
of hers or mine, her education and life chances were passing her by.

It feels like a punishment.

After more months of limbo spent at home, she is currently at a school for
children with moderate learning difficulties. Because there is nowhere else
for her to be educated, in this LEA area. It took great efforts on my part
to get her there.
I have heard that every week, different sets of parents weep in despair and
frustration in the Head Teachers office on visiting the school and pleading
for a place for their child
- just as I did.
The teachers are refreshingly and of necessity much more understanding at
this school. They even have a sense of humour. Amazing. Wonderful.
She may be able to do one or two GCSEs here. The head teacher was almost
apologetic about this. It is not his fault, he is trying to understand and
accommodate her needs, and be honest with me, which is marvellous, and so
very refreshing.

The school had to pay for their own speech therapist, but then she left. The
Head Teacher has been trying for many months to get a replacement, but
according to reps. from our local Health Authority, our area is
under-resourced. Speech therapy resources in the County are described by the
Headteacher as “sparce”. The Health Authority is unable to fulfil its
statutory obligations.

My daughter is capable of getting the average amount of GCSEs, but because
Asperger Syndrome is not adequately understood or supported in this country,
if at all, she will not achieve them or her true academic potential within
our educational system. We have to look upon one or two GCSEs as a start.

I feel terrible that she is not currently able to study what children in
mainstream schools can take for granted. She cannot keep pace with them,
because of the lack of provision for children like her.

Language Units are absolutely essential – a lifeline - for such children,
but there are very few, and even less senior language units. Children are
thrown back into mainstream as soon as possible - to sink or swim. They very
often sink, but nobody appears to care. And these are young extremely
vulnerable children with their whole lives ahead of them.

We desperately need more language units and more speech therapists.

Those with Asperger’s Syndrome go through quiet, secret, invisible, internal
hell.  Those denied a diagnosis, who do not know they have it, experiencing
the constant inexplicable rejection, must conclude that they must be
misfits, horrible, or cursed people.
When we first read about Aspergers together, (in Tony Attwood book “Asperger
Syndrome”), there was a feeling of instant recognition, and relief.
My daughter said: “I thought I was horrible”, and “I thought I was the only
one”.
Diagnosis is imperative to aiding self-knowledge and to prevent self-hate,
guilt or blame.

I now take her as often as I can to meet other “Aspies” face-to-face, that
we have met via the Internet, and I believe this helps them all to an
extent.
The similarities in experiences are striking. The young people find relief
in comparing their histories and behaviours.
Parents find relief in comparing their negative experiences with schools,
SENCOs, Educational Psychologists, Psychiatrists, Doctors, Paediatricians,
Diagnostic Centres, the DSS,  LEAs, and feel less like failures, because we
have all been treated with similar ignorance of Aspergers, or blamed or
denied help.
The almost complete lack of specialist educational support or provision for
Aspies, and therefore lack of understanding of, the humiliation of, and
rejection and neglect of them in wider society is totally appalling and
inexcusable.
Many Aspies we know of have contemplated or attempted suicide.

The stories about the behaviour of mainstream children towards them, (even
teachers, who should know better), are shocking, when you think that those
in the so-called mainstream are so-called “normal”, and therefore have the
advantage of understanding. They have at least the possibility of sympathy,
and tolerance, and should try to behave decently to them.

If the hidden inner pain of Aspies were to be broadcast over a loudspeaker
system around the world it would be deafening.
There are many web sites or discussion groups where young people with
Aspergers Syndrome or similar difficulties, give testimonies to the
emotional torment they have endured at mainstream school, where the other
pupils, teachers, and Head Teachers and often SENCOs do not understand
Aspergers Syndrome.
If our bright but Aspie children are forced to be in the mainstream they
should be adequately supported.

The girls in the park are getting on with their education and with their
lives. My daughter is being left behind. The gap is widening.

I will not be with her forever to be her advocate, personal interpreter on
the behaviour and conversation of others, social facilitator, her running
commentary on TV programmes and films, and mediator or buffer between her
and life.

The busy, rushing, distracted world out there has problems of its own. War
here, war there, muggings in London, children abducted. Society has other
priorities and headlines. How can it possibly care about children with
Asperger Syndrome?
And to parents like me who are so totally taken over by their “career” as
carer of their child or children with special needs, many things / concerns
in life, seem so bloody trivial.
The professional services that should be there to help us have of course
made huge efforts   – huge efforts that is to avoid giving her a diagnosis
and support.

BUT THERE IS NO APPROPRIATE EDUCATIONAL PLACEMENT / PROVISION FOR CHILDREN
WITH ASPERGER SYNDROME.

THERE IS NO INFORMATION, AND A LACK OF HONESTY AND MORAL INTEGRITY IN THE
WAY WE ARE DEALT WITH BY LEAS & OTHER SERVICE PROVIDERS (WHAT A MISNOMER,
JOKE OR IRONY: “SERVICE PROVIDERS”) ETC.

WE GET THREATS OR CENSURE, NOT SUPPORT.

I know from talking with other parents of children with Aspergers Syndrome
that this is the case throughout the UK, unless you are wealthy or extremely
lucky.

CHILDREN & YOUNG PEOPLE WITH ASPERGER’S SYNDROME, and their parents or
carers ARE SUFFERING.

Mainstream schools are largely ignorant of what Asperger’s Syndrome is and
what such a child’s needs are.

Over the years - as with other parents of children with Asperger’s
syndrome - LEAS, Health Authorities etc adopted the same policy to me, to
avoid having to spend any money – lie or deny, duck and blame, or all of
these together. The last tactic is possibly the worst.

To apply for Disability Living Allowance, parents / carers have to fill out
a form that is a cruel reminder of, and emphasises every detail of their
child’s disability. All the negative things have to be set down in black and
white. It’s one thing living with them, but another thing to have to think
about and list them, describing them explicitly. It is a shock. (The
depression hangs around for weeks afterwards.)

(Imagine if someone wrote a list of all the worst things you do or say, and
described your personal / intimate care. If you knew or were aware of this,
you would feel crucified, betrayed. Imagine having to do this about someone
you care deeply for, your own child.)
Normally a loving parent would consider the whole child, and be positive,
kind and balanced, making allowances for and probably adapting to their
behaviour. They try to take each day as it comes, trying to calm them at
night so they go to bed with as few worries as possible, and starting afresh
each day, despite what tantrums happened yesterday.

But a DLA form is an extremely depressing thing to have to fill in. The
facts look bleak without being balanced or tempered by love and concern. It
feels like a terrible betrayal for a few pieces of silver. However, without
DLA, a carer would sink without trace on minimum basic benefits.
The DLA form is sent back to the DSS and processed by someone who knows
nothing about Asperger’s Syndrome. This appears to be regular gatekeeping
procedure: Use staff who know nothing about Aspergers to check through the
form, deny the allowance (this stalls payment). Force a Tribunal attendance,
in a year’s time. I suppose this will discourage the applicants who are not
made of sterner stuff. (Probably those most in need of help, information and
support.)
Tribunals are commonly used, now it seems, as a matter of course, as a usual
device, to put off parents from applying for support, either from DSS or
LEA.
Because it is an invisible disability, and because much of the behaviour
occurs at home, I  made tape recordings of my daughter, without her
knowledge, to present as evidence to the Tribunal. From experience I knew
that otherwise they would not have believed me. I felt utterly disgusted
with myself.

If autism were to be detected when a child is very young, by some sort of
indisputable test, then maybe parents would not have to go through all these
time-wasting yet immensely stressful procedures.

(Some research teams are looking for the genes involved with language &
autism spectrum disorders. Other research is going on into the movements of
tiny babies - these can show the existence of autism, even at such an early
stage, and possibly be used for diagnosis, to enable early intervention.
Physical, indisputable proof at last, maybe).

As carers, our lives and potentials are put on hold, frustrated,
unfulfilled. We feel we are burdens on society, failures.
The preparation for a DLA Tribunal is very time-consuming, and the ordeal
itself is very stressful and humiliating. Parents have to “justify”
themselves. They have to put their integrity to the test. Yet they feel
guilty for asking, because ideally they would like to be able to manage
without, to be able to buy what the children need. Children with such
difficulties need to be cared for / diverted continually. Trips are almost
compensation from parent to the child for their difficulty. This need to
compensate arises from the guilt a parent feels for having produced them.

When young, some of us dreamed that one day we would be able to help others
who have come by difficult times. What if you find that it is you that needs
the help? Pride makes it hard to ask, and hard to receive.

To be an “Asperger Parent”, you have to be strong, (you may be threatened
with legal action), focussed, know somehow (from the outset, almost in a
psychic way,) all about Asperger’s, language disorders and their
manifestations, know about the relevant criteria for entitlement, codes of
practice, educational law etc, while at the same time caring for your child
and being compelled to deal with the everyday problems and upsets.

Back to the Easter Reunion in the Park.
In a sense the girls’ very obvious reaction did me a big favour. It was a
sort of vindication. I almost wish it could have been filmed, and I could
send it to all those smug, be-littling, “experts”, who had all seemed to
want to deny my daughter had Asperger’s Syndrome. They tried to force her
back into mainstream school. I was made to feel like an over-imaginative,
fussy, time-wasting mother. I was made to doubt myself. My judgement and
capability as a mother was undermined.
We have both been damaged, and our life chances reduced, by the system’s
inability to cope, because of lack of funding and will. The system makes us
into people who write pieces such as this to let off a lot of steam. Shocked
and despairing victims. Deeply disappointed and disillusioned with our
civilised society. The realisation that as individuals we do not count at
all.

Children with Aspergers should not have to endure mainstream, where a
mainstream school is so inflexible that it refuses to even learn about
Aspergers syndrome, or deny the extent to which one’s child is affected.

What happened at the Easter Reunion has in a strange way lifted a weight off
my shoulders.
I should be grateful to those girls that their reaction to my daughter
proved to me beyond a shadow of a doubt that my daughter would never be able
to fit into or be accepted in a mainstream school, and I can now punish
myself a little less.
I can now stop feeling that I should have had “more backbone” in my dealings
with my daughter and perhaps forced her back there, to get her an education,
whatever the effect on her emotional and mental well-being.
Even in junior school she was talking about suicide. Should I have “called
her bluff”?

My guilty feelings about moving my daughter, taking her out of school,
insisting on her being in an MLD school (because there are no senior
language units) have lessened.

Just because her hidden problems were hard for me to explain, even to
myself, let alone describe to other people, and because the people I tried
to explain them to didn’t know, understand or want to know about them, did
not mean the problems were not there.
If a child is denied a diagnosis, and parents thus denied access to specific
and different descriptions and terminology, how can parent describe their
child’s behaviour?

The powerlessness, the brick wall. It is like screaming in the vacuum of
space. Like the line from the film “Alien”; “In space no one can hear you
scream”.

I have done my very best, but there just isn’t an appropriate education out
there. If there is, it is hidden behind a series of insurmountable obstacles
such as my own lack of money and therefore power and choice, jealously
guarded LEA funds, the simple fact of what LEA area you live in, and general
lack of knowledge about Asperger’s syndrome.

Who, is going to take responsibility for the education of those with
Asperger’s Syndrome, and similar hidden or subtle disabilities? When?
There must be no more waiting, no more suffering and isolation for our young
people.

I attended a “consultation” session between the LEA and parents of children
with special educational needs from the area. It turned out to be a
presentation or justification, not a consultation.
I thought it very significant that of the three Mums who stayed behind to
talk to the LEA representative, (out of all the parents of children with
different special needs there, who could have stayed behind to talk to him,
all were mothers of children with Asperger’s Syndrome, and all were
struggling, and no exaggeration, undergoing tremendous hardship because of
their child’s problems plus the lack of educational support, and therefore
in emotional and mental pain.
One Mum was having to re-mortgage her house - her husband was having to work
abroad - to pay for her son’s place at a private special school. Her
marriage was, as a result of the stress, getting very wobbly indeed. The
other Mum was on the verge of a nervous breakdown, (according to the other
Mum who knew her), and then there was me, chipping in to add to the force of
their arguments, and feeling the unreality of my situation.
So many things to say. So much frustration. So many things needing to be put
right.
We were answered by the sort of bemused “dodging” tactics you get when you
try and lobby a politician in the foyer of the House of Commons. They
certainly know how to manipulate language, even if our kids do not.

My catch phrase (“You have no idea”), became so apt but unspoken, yet again.
My déjà vu again in full swing.

As everyone left, I saw one of the LEA reps go up to another, near to where
I was standing, and whisper, (too loudly): “They were a lively lot tonight”.
Too bloody right.

Once, I went to look around a very rare thing, a school in South London,
which caters for children with autism (including Aspergers) of MLD and above
ability. I went because I wanted to find somewhere where my daughter can
achieve her full academic potential. The head and teacher that we met seemed
very understanding. However although the school is very enlightened and
accommodating re: the autism part of the children, it cannot offer GCSEs.
The Head said that for bright children with autism, the education system is
unable to both help with the autism, AND meet and fulfil their academic
needs in the same setting. Our education system just does not accommodate
both, which is the exact experience of other parents and myself.
THERE IS NO PLACE IN THE EDUCATION SYSTEM FOR OUR BRIGHT AUTISTIC CHILDREN.

Naturally we want the autism part to be tackled first, but should our
children have to forever be dependent on society, denied a proper education,
and life chances?
Why must it generally be one or the other?
There were four lots of parents to look around the school, including me. It
was obviously a very enlightened clued-up school regarding autism, and
therefore extremely rare.
We all knew that if we wanted our children to be able to go there we would
all have fights on our hands, and our kids would have a long daily journey.
We all had very similar tales to tell, we all felt isolated with our
children, because very few people, especially “experts”, outside the family
can understand what this hidden disability is like to live with and cope
with. We all felt totally frustrated by the services / bodies /
organisations / professionals / experts that are supposed to be able to help
us.
The Head said to us very openly that ALL parents of children with autism
have to struggle as we have to. It is a universal experience. WHY?

He also said that the Government is storing up trouble for itself in the
future if it does not acknowledge the rising numbers of children with
autism, and support them.

Most ordinary people can if they wish have the choice of being able to go to
evening classes, and take a course.
Yet my daughter has been unable to access the first basic chance at
education. She is too young for evening classes / college. Colleges are not
able to take her till she is 16.
I tried to get her in to a local college under-age. They have a special
needs support unit. At first they seemed very positive. I took my daughter
to have a look round and she sat some written tests. I did not hear back. I
chased them up by phone. The reasons they gave me why she could not go
there: 1. She only scored the 30th percentile. 2. She would not be able to
cope in the environment of the college. 3. The LEA was not likely to fund
her. (I heard later that the LEA – amazingly - would have funded her.)

I feel a failure because I cannot get my daughter a proper education, no
matter what I have said, no matter how many times. It does not matter what
kind of person you are, or what you do, if you have a child with autism or
similar hidden subtle disability, a parent CANNOT get educational support
for their child. Parents cannot fulfil their own career potential in life
either.

The stress is great and relentless. Self-respect and confidence is
diminished. It makes one reluctant to get involved in anything. You withdraw
from other people because they cannot understand.
My daughter has constantly been on my mind, my inability to get appropriate
educational provision for her, constantly causing me guilt and distress. I
have felt guilty for feeling depressed, and for being ineffectual in getting
her support.
How can we move on, take part in, in fact live a normal life? I studied
part-time at college, made the effort, but always felt subdued, defeated,
frustrated, emotionally and mentally drained..
How can we enjoy life, or go forward, knowing our children cannot achieve
their potential, and are more than likely going to have a very hard,
stressful, isolated and sad life?

I have felt guilty for not being able to go to work. What a waster, what a
lazy cow.

Then something happened – the reunion in the park - to justify in a sense
why I have had to keep my life as clear as possible in order that I have the
energy to mentally and physically support my daughter.
Yesterday evening, my daughter, who has an obsession about her weight, asked
me if she had lost any weight. She usually stands in front of me, and stands
sideways, so I can view her body profile. To most other Mums this might
perhaps be just another, occasional, question. But coming from my daughter –
on a regular, everyday basis - it fills me with dread. I have to tell her
how much she has lost, in exact pounds, and how much she has lost since
(whatever time she mentions in her question e.g. when she was at junior
school, last month, or when we went to Wales on holiday ... etc.
Being human, I cannot always remember how much she has lost since when, in
these very exact (to the very last pound) terms.
If I do not answer, she will get frustrated and repeat “Mum?”, “Mum?” over
and over till I reply. If I tell her I cannot remember when and how much,
she will still get frustrated and angry and say what a terrible memory I
have. (She has little empathy so her language is not tempered by conscience
as to the effect of words or their daily repetition. She cannot understand
how rude this might appear to an outsider.) If I say she looks fine, this is
not accurate enough for her, and I can be accused of “lying”.
If she hasn’t lost any weight she gets depressed, and still ultimately has a
“tantrum”. A tantrum can mean: hitting herself on the head, throwing things,
stamping, slamming doors, and screaming.
Last night she stood about two feet away from me and screamed her very
loudest, which went right through my ears. It shakes me up and it hits me in
the stomach emotionally every time.
When I hear her upstairs “growling” or “roaring” about something, I know a
storm is brewing, but sometimes temper-wise she goes from 0 – 90 in a few
seconds, and before you know it, something is broken, or she is laying about
her own head.

I sometimes reach a stage where I don’t know what to say to my daughter any
more. Reason doesn’t come into it. You cannot reason with autism. You have
to develop coping strategies, but they are not obvious. I am often at a
loss. I would love to have someone who knows about how to deal with Asperger
’s behaviour with me each time this happens.
Our children behave differently with us from when they are outside, in
school, or when in consulting rooms. Sometimes the control is not complete,
or their different behaviour is observable to others. To other people it
appears to be rudeness, or that your child is obnoxious.

I have learned to try and divert or calm her, and sometimes to ignore
things, which you would normally tell a child off for, but which she cannot
help. There are some trigger words I cannot say to her, or subjects I cannot
introduce, or she will start off with one of her anxious reactions.
A chance remark can lead to an anxiety or obsession. If I say something
which upsets her, she tells me to say to her “I never said that”, so we can
re-set the clock, begin again, as if whatever it was hadn’t occurred, so she
will not be troubled by it. I have to choose my words very carefully, or she
will pick up on something I have said and get very angry very quickly.
When we go out for a walk, she asks over and over again, “How far do you
think we have walked?” “How many more miles do you think we have walked?”,
“Do you think we have walked x miles yet?” How many miles is it from here to
the park?” etc. I groan inside and try and estimate the distance. She got a
pedometer for Christmas.

I have to take her for a walk on a regular basis, as a matter of urgency,
because she gets stressed out from school, and from life in general, gets
very “hyper”, very quickly, so we have to dispel this sudden negative energy
with physical exercise. We cannot have a relaxed walk. Sometimes we have to
use the back streets to avoid seeing anyone – sometimes she just cannot cope
with other people. We literally have to take a different path to others, as
well as feeling different in life in general.
It is hard to describe just how controlled our lives are, unwittingly, by
her.
If she is watching the TV, on the computer, or trying to do school work, and
anyone so much as whispers, she will “SHHHHH” us up. Failure to comply
inevitably leads to an explosion.
I presume she cannot cope with the slightest background noise.

There are so many little or big everyday things that we have to accommodate
or she cannot go forward / function. She cannot help it. She is just wired
differently from most people. She doesn’t have the “software” for empathy,
social cues etc. Yet she is a kind, thoughtful, intelligent girl. (You tell
me what is going on, and why these seemingly conflicting qualities co-exist
in her, lack of empathy, yet kindness, and humour, I cannot fathom it.)

She does not subject her peers to what she subjects us to at home, she
controls it, but obviously something often goes wrong with or is very
difficult with her social contacts at school, because her few friends are
those who also have similar difficulties.

Of her peers in the different schools she has experienced, she says:
“Everyone seems to find me annoying for some reason.”

The latest battle in the overall campaign, was for transport to and from
school. My daughter was refused a place on the school bus because she lives
within a three mile radius of the school, and I was expected to accompany
her to and from school every day.
This means perhaps that a single parent, on benefit, is expected to pay
nearly £40 per week in taxi fares. (How is any parent of children with
special needs supposed to be able to work under such circumstances?)
I was told I could appeal. The same old tactic from them. The same old
feelings of stress and indignation from me. After a few more letters from
me, we now have transport.
I don’t know why we suddenly got it after all. Which rude thing that I was
driven to say “did the trick”? Why did I have to fight? I didn’t want to
have to do this, or be like this with other human beings. I resent always
having to be the “bogey parent”.
The words written here are not to try and wallow in self-pity, or to attract
attention. I did not seek my situation. I am proud, but am just being open.

Children with Aspergers / high functioning (classic) autism, Semantic
Pragmatic Disorder, Dyspraxia or other similar “subtle” / hidden
disabilities, should have their needs met. There should be support not
censure for their parents.