Spectrum

Produced by and for autistic people

The

Edition 97 January 2019

 The Spectrum

The Spectrum is run by and for autistic adults This magazine was founded as Asperger United
(although some parents subscribe on behalf of in 1993 by Pamela Yates and Patricia Howlin,
their under-sixteens). The magazine aims to in association with the Maudsley Hospital,
connect autistic people through their letters and and Mark Bebbington and Judy Lynch of the
articles and to share information so that they can National Autistic Society.
lead more independent lives.
This was in response to a recognised dearth
Please note that the Spectrum receives many of services for people with Asperger syndrome
letters each quarter so it is not possible to and the potential for self-help and networking as
respond to every one, nor for every contribution a means of support for this group.
to be printed. Discussions on editorial choices
will not be entered into. The magazine protects The provisions for editor’s and sub-editor’s
the identity of contributors by not printing full post was to develop a publication that was truly
names unless the writer asks for their full name to the voice of the people it was aimed at. This post
be used. also provided the possibility of work experience
and responsibility and has benefited those who
The Spectrum is available at have held the position. These are Richard Exley,
www.autism.org.uk/thespectrum David Wright, Martin Coppola, Ian Reynolds,
or by paying a subscription. To subscribe you, we John Joyce and the current editor, the Goth (who
need your postal address. Please subscribe online does not wear black).
or contact the Goth for a subscription form.
All contact details are below. Organisations Pamela Yates provided support and advice to
requiring multiple copies: please get in touch. the editors until the publication was handed over
to the National Autistic Society in 2000.
Editor: the Goth
The name Asperger United was chosen
National Autistic Society production support: by the group of original readers as the most
the Content Team “appropriate name” for the publication.
This was suggested by Anna Kaczynski. The
NAS phone support: the Supporter Care Team
name the Spectrum was suggested by dozens of
NAS database support: the Data Services Team people and chosen in an online poll in 2018.

Please send all correspondence and subscription requests to:

Email: [email protected] All we need is your email address and we will

add you to the email notification list.
The Goth
c/o The National Autistic Society Please note that the views expressed in the
393 City Road Spectrum are not necessarily those of the editor,
London the National Autistic Society or those involved in
EC1V 1NG the publication of the magazine.

Tel: 0808 800 1050 (free from most landlines) or Tel: 020 7923 5779 (geographical charges apply)

The Spectrum is available inlarge print on A3 sheets (double the size of this page). If you need
large print, please let us know using the email address or postal address above.

Contributions for the next issue should reach the Spectrum by 11 February 2019
2
 editorial

Welcome to the January edition of the you don’t tell me when I get something wrong,
Spectrum. I will probably go on getting it wrong, so I need
negative feedback as well as positive feedback to
I was very surprised that in this postbag judge how the readership feels.
I received almost nothing about one of the
suggested themes for this issue — pets. So Do not fear, however, pet-lovers! Get writing,
many people I have been in contact with seem and hopefully the April issue will include lots of
to derive a significant part of their social life letters and articles about pets and animals. Or you
from having pets or working with animals (often could write in about why you think “pets” was an
as a volunteer) that I was expecting a massive unsuccessful theme?
postbag, but no.
As ever, I look forward to your letters and
Instead I got many more letters about the emails,
changes that are happening here, so I decided
that letters and articles about change would Yours,
dominate another edition — I hope this is okay,
and please let me know if you don’t like it! If the Editor

the what-no-pets? edition — suggestion for next issue on page 5

Contents

Art by Peter Myers . . . . . . . . . . . . . . . . . . . . cover A new therapy for people with autism . . . . . . . . . . . 12
article by Max
Hans Asperger: a response to the latest . . . . . . . . . 4-5
by Graeme The Asperger’s syndrome victim . . . . . . . . . . . . 13-15
article by Bruce
Letter in response to Jehovian . . . . . . . . . . . . . . 5
from C Attleya Getting to the heart of the head . . . . . . . . . . . . . 16-17
article by Virginia
Dealing with change – article by Rosie . . . . . . . . . . 6
A letter about a book . . . . . . . . . . . . . . . . . . . . . . 18
Pen pals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7-8 by Anne-Laure

Letter about change from Laura . . . . . . . . . . . . 9 New cover colour – notice by the Goth . . . . . . . . 18

Letters to the Editor . . . . . . . . . . . . . . . . . . . . 10 Open letter to the NAS about clapping . . . . . 18

one in response to Heidi from Ji, from Michael
one about capital “a”s from Laura, and
one about the new name from Nicholas The rules of the Spectrum . . . . . . . . . . . . . . . . . . 19

Strip cartoon . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Spring! . . . . . . . . . . . . . . . . . . . . . . . . . back cover

by S Gribben article by Tony
3
 feature

Hans Asperger: a response to the latest

revelations on his war record

by Graeme

In recent times certain research by Herwig Czech, as they were considered a burden on society,
of the work of Hans Asperger, an Austrian as well as not being eugenically pure. If Hans
physician, after whom Asperger syndrome, (a was selecting children for this euthanasia clinic,
form of autism), is named, has laid charges on which he was not (it was his superior, Professor
Hans Asperger of collaboration with Third Franz Hamburger, a dedicated supporter of the
Reich ideals of genetic purity by sending disabled Nazi regime), Hans was doing nothing more than
children to Am Spiegelgrund, a “clinic” where anyone else in that place at that time.
they would be killed.
They were dark and wretched times when
These revelations have caused much pain much of Europe and some parts of Africa were
and hurt for those with a diagnosis of Asperger’s under Nazi rule, and we are thankful that the
syndrome, with some being ashamed and not Axis powers were defeated by the allies. We must
wishing to use that diagnosis or feeling dirty. ask how much of what Hans is alleged to have
done is any more collaboration with the final
The main issue I have with this latest research solution than say the train drivers who drove the
is the conduct of Herwig Czech in publishing trains that took the Jews to the death camps?
this new research and the way he froze out Steve What about the railway signalmen who made sure
Silberman when he was asking about information those trains got there? Were they card-carrying
for his book, Neurotribes. members of the Nazi party as well? Should they
too have stood trial at Nuremberg? They were
What has been done is put this research about complicit but were they fully culpable? This is
Hans Asperger out in the public domain with no why historical context is vital to understanding
reference to the context of the time, thus causing the past.
the aforementioned hurt of those with the
diagnosis of Asperger syndrome. The other point that was ignored when this
research was put out there was that if anyone did
First of all, eugenics and sterilisation that the not abide by the Nazi line, then that could spell
Nazis were infamous for, and now also attributed their doom. Some did stand up to them and paid
to Hans, was not invented by 1930s Germany. It a heavy price for that resistance. In that context
was an American idea that they copied. Eugenics we can very well see Hans going along with the
and sterilisation came from the Land of the Free appalling atrocities of the Third Reich, along with
— was there any mention of that in this research? others, because of the consequence of not doing so.

Regarding the context of the time, the A question I put to those wishing to
concept of euthanasia of disabled children, an remove Asperger from the lexicon, because this
anathema to us today, and rightly so, was seen in academic says he was complicit with the Nazis
the 1930s and 1940s in those placed under control in the extermination of disabled children: if he
of Nazi Germany (in this case Vienna in Austria) was so much in agreement with Nazi doctrine
as acceptable and the way things were to be done. and policies, why did he never join the Party
Even parents would request their own children of National Socialism like a number of his
to be euthanised if they were seriously disabled contemporaries (even by Czech’s own admission)?
4
 feature (continued), a letter and a notice

As for his name on our condition, Hans Finally this has also been a distraction as
never gave his name to it, which was done by eugenics is still being carried out to eliminate us.
Lorna Wing in the early 1980s. Hans never Why do you think they are looking for a test to
sought the honour of having his name ascribed see if there is an autism gene in unborn fetuses?
to a condition. It was done by the lady who gave Did anyone catch that news item on how Iceland
us the autistic spectrum and did a lot more for is going to eradicate Down’s syndrome? — how
autism research and also had an autistic daughter. do you think they will achieve that?

Dear Editor, A follow-up (parallel) novel, set in Canada’s

Ultimate East, is expected to be published in
I am writing to you because I read Jehovian’s November of this year (2018).
article Theory of aetiolog y of Asperger syndrome (AS)
partly due to extra-terrestrial (ET) genetic inheritance in The main character in this novel has been
the July edition of your magazine. diagnosed with autism, is highly intelligent and
in possession of alien DNA. In this novel, major
This article struck a chord with me, because roles have also been assigned to a number of
I recently published a novel which is based on highly intelligent children from a special-needs
a theory that extra-terrestrials inserted DNA in school. They are brilliant, but they do have some
humans. It is set in Kent in England. problems communicating with neurotypicals,
especially their teacher.
“If you were consulted, would you vote to
have most of humanity removed from Earth? I would like to offer Jehovian a set of
hardback copies of my already-published books,
Who would you choose as your seven and in due time, a copy of my new novel which
companions to restart a new population? will be published later this year.

While the human race is at the brink of Would it be possible for you to contact
being cruelly exterminated by self-absorbed Jehovian, and ask him/her if he/she is interested
world leaders, Caila is one of thirteen humans in my offer?
who are pulled out of their ordinary existence
by an alien species. After being consulted on For more information about these novels,
the future of human existence, Caila is tasked please visit my website:
with the start of a new human population,
whilst discovering and coming to terms with https://www.haszit.com/
her own mixed human/alien origins.”
Kind regards,

If sufficient material is sent in, the theme C Attleya

for April will be pets and other animals. Vote
with your contributions: the more submissions For your information, I have never been diagnosed
on a subject sent in (from different people) the as being autistic. However, people have suggested
more likely that that subject will be the theme. that I probably am, and they are probably right.
Writing on any subject is still welcome (though
I hope the subjects of change and pets will I have written to Jehovian, but I have no money to forward
produce lots of emails and letters) as are ideas large items like hardback books! I have a small budget
for new themes, and artwork. Remember, if you for forwarding letters and contacting people, but that’s it.
want to see different content in the Spectrum, the I hope that by the time you read this, Jehovian will have
best way to change it is to send something in! replied, Editor.
5
 an article

Dealing with change — courage is not

the absence of fear

by Rosie

Change can be scary. this change doesn’t “Plans” Black and white
That’s what everyone make any sense to my
says. For an autistic routine. The outcome When neurotypicals I doubt I am alone
person change is not will not make going use the words “plan”, in experiencing a
just scary. Change is through the change “meeting” I very small amount of
being dropped into the any easier. consciously put in air change and my mind
middle of a desert with quotes. I remember concluding that
no map or direction. Below are a few the first time a absolutely everything
No resources or safety. ways I have developed meeting changed has changed. It has
It’s unsettling and at to deal with change. at work. It led to a become increasingly
times terrifying. meltdown because important for me
I had planned to to break down what
Change is Safe zones face a challenge at a has changed and
inevitable. That’s specific time and my appreciate that much
another one Starting work after preparation revolved of the original is still
neurotypicals like university opened around that time. present. That is, this
to throw around. my routine to a lot of Moving the meeting magazine’s name
Unfortunately, there change. From public wasn’t a shift in the has changed, but the
is no denying this. If transport to changes plan, to me it was a articles, the content
you wish to pursue in my environment whole new meeting and the authors are
anything — a career, and schedule. I that in no way all still familiar.
hobbies, or anything compensated for resembled the previous It is important to
else — things need this by boxing off plan. I realised after balance the fear with
to change. The part safe periods of my this that most people’s acknowledgment that
that is always the most day that were tightly work plans are more familiar comforts are
difficult for most to planned. I got home work suggestions. still present.
understand is that and had the same Categorising these as
change, even with a food every night, such has been a huge Acknowledge
great outcome, is still a watched my special help. A meeting at ten the courage
horrible experience for interest show and fell o’clock is a suggestion
an autistic. You could into a very regimented of a possible meeting Experiencing change
tell me I am not going routine to recover and I will prepare two is hard and no
to work on Monday, from any change I options for my plan amount of preparation
but I am instead going had experienced that at ten o’clock, should or recovery will take
to meet JK Rowling. day. If you live with it occur or not occur. that away. Fearing
This is my ultimate people, it is important This takes more effort change yet putting
dream, yet my brain to involve them in beforehand but saves yourself in these
will still scream at me these allocations of meltdowns, which are situations is brave.
that that is not the safe times and build not something I want Acknowledge that it’s
plan. I go to work routines that work for to happen nor recover a hurdle and be proud
Monday mornings and you. from. of getting through it.
6
 pen-pal page

Pen pals
How to place a pen-pal
advert
> All you need to do is send your advert along with
your name and address (and email address if you
want) to this magazine. You can use the Royal
Pen pal number 271 Mail or email. The next pen-pal number will be
given to your advert when it arrives.
Hi, I’m Olivia and I’m 23. I got diagnosed
with Asperger’s at age 20, after struggling all > Please note that this magazine does not print dating
of my life, and not understanding why. I’m adverts, as it is unable to provide suitable support.
bed-bound due to having severe ME, PoTS
and several other illnesses. > Those under the age of sixteen must have parental
permission before placing a pen-pal advertisement
My interests are: documentaries, in this magazine.
audiobooks (anything non-fiction, from
biographies to science or psychology),
> If you get no replies, please don’t take this personally.
drawing (though I’m not very good at it haha),
painting, animals and my Nintendo DS. How to reply to pen pals
My current special interests are learning > Please remember to let us know the name and
about cults and also about psychology. number of the person whom your letter is for. (All
pen pals are numbered by the editor, not the person
I’d love to find people to email with! who sends in the advert.)
> Please remember to put your address on your letter.
> To contact a pen pal, please send your letter to
Pen pal number 272 the Goth, c/o The National Autistic Society, 393
City Road, London, EC1V 1NG, or email
My name is Richard. I am 47 years old and [email protected]
I live in Stockport near Manchester.
> We will pass your letter on to the person you wish
I am a full-time carer for my mother. I to contact. However, we cannot guarantee the
was diagnosed with autism just over a year person will reply as that is entirely their decision.
ago. > Please note that all pen-pal letters sent via this
magazine are opened before being passed on.
I also have anxiety and depression
which have been part of my life for over
thirty years. **Important notice —
­ please read**
This magazine is happy to publish pen-pal
I enjoy listening to music, computers
advertisements but we must stress that we are not
and keeping up to date with technology.
a pen-pal or introduction organisation. We do not
match people up and we cannot monitor letters
I also like spending time by the coast
(other than the first letter, that is sent via us) so
and taking photographs.
please be cautious when releasing personal details
in your letters. The National Autistic Society / this
I am a caring, non-judgmental person
magazine cannot intervene or be held responsible for
and I would like to hear from anyone with
any ensuing correspondence between letter-writers.
similar interests.
7
 more pen-pal adverts

Pen pal number 273 Pen pal number 274 Pen pal number 277

Dear Sir or Madam, Hello everyone, Hiya, my name is Rob. I’m

50 years old and I have high-
I would be honoured if you my name is Ozflinders. functioning AS.
could help me to find a pen I’m 49. My interests include:
pal. listening to music, creative I live with my wife and
writing, drawing, photography, two daughters (14 and 11) in
My interests are studying, and so on. Bristol.
collecting model cars, doing
my Peer Training for Recovery I’d really like a pen pal with I work for a care
College for last two years, Asperger’s — your interests can home charity, managing
collecting coins, paranormal, be different: it’s nice to live and refurbishment projects and I
horror. I have been a Lord learn. travel across the UK. I love
over a year now. the long drives which give me
Hope to hear from you plenty of alone time, and I’m
I would like people to write soon. happy with staying away in
to me first, so I know who hotels a few nights a week.
they are before giving them my
mobile number, so I know they I have had many
are genuine, and my date of Pen pal number 275 obsessions over the years
birth is in 1977. but am currently focused on
Hi Spectrum, DIY in my home and my
I don’t mind if they have current collection obsession is
been in hospital or not. my name is Naomi. I am collecting woodcraft books —
18 years old and have just been more than I’ll ever read.
They can call me John, and diagnosed with Asperger’s. I
I don’t mind if they are male hope to be contacted by others I love podcasts on my long
or female, and feel a bit lonely my age or above. It’s sometimes journeys and I’m currently
because I will be there for difficult to find people who listening to hand-tool talks,
them as long as they are willing have been diagnosed and know but have recently finished
to stay in contact with me. what it’s like. I’d like to share many audio books from Bill
my experiences and learn about Bryson, James Patterson and
When they phone me, it others. I like music, henna, Sergei Lukyanenko: I love
will be direct to me and it has food, and spending time with fantasy and sci-fi.
to be after 9pm, when I am people I love: laughing is a
free to talk. must. On TV I’m currently
watching The fringe, Criminal
Yours faithfully, Thanks, minds and Sleepy hollow as well
as Bake-off.
John Naomi
I enjoy lots of different
types of music: Ben Drew,
Pen pal number 276 computer games, writing and Amy Winehouse, Mary J Blige,
many other interests. I would and some funky dance music.
Hi, my name is William, I like to hear from anyone who
live in Wales, I am 20 and have is around the same age and Would love to chat with
Asperger’s. I enjoy slapstick looking to make some friends. similar-minded people.
comedy, steam railways, Thank you for reading this.
8
 a letter

Dear Sir or Madam, The ability to handle whatever life throws our
way with our learned coping mechanisms to
we live in a world which is continuously guide us through.
accommodating new and extraordinary changes.
From thrilling developments in technology to the Change is unavoidable, as much as it pains me
day-to-day changes we face in our personal lives. to say. Although scary, changes don’t have to be
bad and they can actually signify the beginning of
For those on the spectrum, tolerating change something beautiful. The reason behind changes
(regardless of how minor) can seem excruciating isn’t always clear, which again is tricky to tolerate
and like the most daunting process imaginable. due to the fear of the unknown, but we can put
We love sticking to our routines amongst the our trust in those around us that it is for the
few people we trust. We enjoy structure and the greater good as opposed to dwelling on fears and
comfort of knowing exactly what each day will letting high levels of anxiety kick in.
bring. We struggle to understand the reasons
behind changes and avoid them because they Without change, things wouldn’t improve.
often appear meaningless, especially when all We’d all remain in our small comfort zones,
seems well and life is going swimmingly and the which can be beautiful places, but they can limit
reason for change doesn’t make any sense. If growth. Caterpillars transform into gorgeous
everything is fine, what is the need for change? butterflies, and that’s the way I am learning to
view the topic. We wouldn’t be blessed with
I struggle to justify the need to do and accept the magnificent things we have without having
things which don’t always result in a black-and- undergone scary changes. Change was crucial to
white, clear outcome. It seems pointless, in the move on from our historic days to a world which
same way small talk does. I prefer knowing what strives to act as a solid foundation for the lives we
will happen and when it will happen, too. I often wish to create for ourselves and our loved ones.
ask myself the above question and jump to the
conclusion that changes will cause nothing but For instance, my journey towards university
trouble. My instant reaction is fear and I become was a daunting change to begin with where I was
agitated and stressed about the possible outcome faced with many challenges. I tackled the move
of the change on the horizon. from primary school to secondary school, and
then to college. So this was bound to be another
I sit in a room and absorb the information success. Meeting new people, settling into my
around me. But without the acknowledgement new surroundings and tackling the anxieties I
that I am doing so. I have a clear understanding held regarding meeting new friends and my new
of the furniture placed to its exact spot and can teachers. Personally, I allowed my autism to act as
easily detect when even the slightest of changes a stepping stone to overcoming my fears because
has occurred. Which only overflows me with I remained positive that it would all be worth it as
confusion and an array of questions as I remain I headed on my career pathway to saving animals.
unaware of what the need for the change was. Nothing was going to stop me from succeeding
in university life, and once I popped my positive
Throughout my life I’ve learned that changes pants on, I truly was winning!
happen every day and it’s the way we familiarise
ourselves with them that matters. Realising that Changes can be terrifying to cope with. But
I have survived every change has assisted in my as long as we put one foot in front of the other,
positive thinking and my growing willingness to confide in those around us and focus on the
take a leap into the unknown. We must forgive advantages, we will be okay and alterations will
ourselves for becoming upset when faced with become increasingly tolerable.
a change, because it’s all part of our condition.
Autism isn’t a disability, but a different ability. Laura
9
 letters to the Editor

Dear Goth, Dear Goth, Dear Asperger United,

I loved the October issue of the I would be interested I just want

Spectrum. The non-binary person on to know what you and the to express my
the cover is beautiful. I’ve never seen readers think about the use of disappointment that
such a masculine, multi-coloured and Autistic (with the capital “a”). you plan to change
striped lady before: her hips cannot lie! I have seen it used to indicate the name of your
Stunning painting. Will Walki tell us if involvement with the Autistic magazine that I have
it is of Heidi? community and Autistic been getting since
culture in a similar way to the 2004.
Speaking of whom, I’m writing to Deaf community.
you in the hope that you’ll pass this I myself have
letter on to Heidi, the Aspie who wrote I think that the Deaf no plans to say I no
the letter to you on page 10. My heart community use the capital longer have Asperger’s
went out to her. Her range of sensory to distinguish themselves or that I am an Aspie.
rubbery squidgies which she keeps in an from deaf people who regard
inflatable “puffy nest” make the world themselves as disabled and Asperger
more reliable for her: these are essential may have little contact with syndrome may be
in the wind for long hair. As an Aspie other Deaf/deaf people. named after someone
myself with certain sensitivities and a The Deaf people see being but I see it as
childlike spirit, I can also understand. Deaf as a difference and something in itself.
An extremely young looking 50, that the disabling aspects of
everyone thinks I’m 33! Well, apparently deafness come from society’s Asperger, not
I used to look only half my age: so interactions with them. They Asperger’s syndrome,
maybe I am catching up at last. Actually are very involved with the I use, as it does not
I study International Finance in an Deaf community and see being belong to him: it’s a
environment which is also peaceful, Deaf as a key part of who they shame it cannot be
calm and non-aggressive — on the are. Although I do perceive promoted for all the
highest hill of Edinburgh. I’m okay after myself as disabled, I think great qualities that
also struggling with being “all grownup” that that mostly comes from people with Asperger
before I had my Aspie diagnosis three my anxiety and depression syndrome have.
weeks ago. I started considering a and how they interact with
vocation to become a rabbi in a niggling my Autism as well as from my I have Asperger
intermittent way, but after three decades interactions with society. syndrome, I think
am still considering it. I can drive and you may find so do
live on my own, but usually just stay at A friend of mine said that many others: I think
home and see no-one. I also think we some people don’t like the you should ask them
Aspies are sensitive souls. Moreover, I capital “a” because medical if they would like a
agree that we could be having more fun diagnoses are usually given change full-stop, not
than many neurotypical grownups. So, capital letters by doctors, just for suggestions
maybe I can visit that Carmelite library which I hadn’t thought about. for what a new name
and read about a friar’s spirituality. I do like the idea of being able should be — that
to identify as being culturally might be an insult?
Ji Autistic rather than just
medically autistic. I would Regards,
PS. I’m on the way-hay! be interested to hear other
people’s thoughts on this. Nicholas
It is not Heidi, as it was submitted several years
after Heidi’s letter, Editor. Laura Asperger’s and proud!
10
a strip cartoon

11
 an article

A new therapy for people with autism

by Max

Hello everyone, my name is Max — Maximillian their skill (obsession). Let’s say the skill is in
to those who get annoyed with me — and I’m hairdressing (a simple example). In the session
classified as a high-functioning autistic. I am a there will be time to explore and develop a
first-year undergraduate studying for a BSc in deeper understanding about hairdressing. If the
autism. I thought — upon taking advice — I autistic is old enough the therapist may try and
would write to the Spectrum to get the opinions of see if there is any possibility to get him or her
autistics about a new type of therapy. I believe some experience working in a local salon. Skills
it is a ground-breaking idea that could really are actualised.
help the community. It is a long way from being
implemented or evidenced. At the moment it The whole therapy ideology centres around
is only an idea. This is the first step in a very the person, listening, enhancing skills, creating
long road to bring a useful functional tool for opportunities. The autistic client will never be
therapists everywhere. If autistics like yourselves pressured to do anything or say anything he
feel the idea is workable and so do professionals or she does not feel comfortable with. They
then that is a huge step for our community. will not be expected to change or alter their
behaviour or made to feel being autistic is wrong
The therapy is called Skill Enhancement somehow. What they want to get out of the
Therapy known in short as SET. The therapy session or do in the session is up to that autistic.
strives to be 100% client-centred. It begins There is a larger picture to all of this but first
with identifying and understanding an autistic’s I want to float the idea of creating a whole-
obsession or obsessions, known in SET as skills. person therapy which enhances the autistic
It would not be looking at transient skills — without changing their inherent personality or
the ones that come and go — but looking at gifts. Today’s therapies I believe (and feel free
mainly root skills (root obsessions) that stay to contradict me) seem to focus on this idea
with us, that we always go back to, those that of change which I feel is wrong. We should
can be called long-term interests. For me, for not have to change. We are unique, and this
example, it is running and politics. It is the uniqueness should be celebrated! If there is a
turning of these root obsessions into lifelong client that has a negative skill (obsession) such
interests or employment skills to give us well- as turning lights on or off, then the therapist
rounded happy lives. This could be the key to will try and replace this with a positive skill such
a better experience in therapy and in life for as operating the lights for a school production.
many autistics. Sometimes therapies just do This is not a change per se: the client still gets to
not work within the community. Instead of switch lights on and off but it is put into a more
viewing obsessions as something inherently appropriate setting. This is all hypothetical at
negative as some therapies do, I believe our the moment but will hopefully be a reality in the
intense interest in a particular thing really gives future. There have been similar ideas such as
us that edge over non-autistics! We really do the Son-Rise Program in the United States, but
know everything about that one thing. That is this whole-person approach is a first (I believe)
a real skill and should be encouraged. In the for our community, written and devised as it is
therapy session the autistic will have time to by one of the community. I want to elicit the
talk if they just want someone to talk to — the view of the community before moving on to the
opportunity is there, this is therapy after all (!), next stage of research as this therapy is for the
but the session will focus mainly on exploring community.
12
 an article with an introductory letter

Hello, move to avoid it, so not to be involved in what

I felt was a hooligans’ game. At school I was no
I am attaching an article that my brother, match for anything as I was a weak, small and
Bruce, has just written and would like to share skinny boy with an asthmatic condition. I was
with others in your magazine. He is trying to ill a lot and stayed off school when I could not
understand himself, as he was diagnosed at the breathe properly. A doctor would come to my
age of 47. I am hoping that maybe responses house to give me an injection to breathe easy
from others could help him be more positive again. I would feel my heart pumping faster as
about his diagnosis as he feels his life is over, but the fluid went in, but at least I could then breathe.
I think if he could get some support things could
really look up for him. I did not concentrate on lessons as I could
not take information in and retain it. I tried, but
It would be great if you could publish his my then-unknown Asperger’s would not allow
“story”. I am trying to encourage him to write me, and, to add to that, disrupting, misbehaving
to others on your pen-pal page, I am hoping this pupils and growing bullies: there was not much
will happen sometime soon. chance for me. I had a lot of bullies, in the end
two dozen — I used to count them. I suffered
Many thanks, intense physical pain, from the punches and kicks
and bruises. 1975 to 1979 was a very different
Isobel world to now, where bullying is not tolerated.
Going to school the next day with bruises, then
to be bruised in the same place again, still painful
The Asperger’s from the day before. It was like a planet of the
evil beings. Everyone was horrible!
syndrome victim
My brain functioned in a way that does not
correspond with others’ ways of thinking. How
by Bruce
many people have been like this in life, unaware
that they are different? I was informed that the
Unknown by me, I have lived with Asperger’s most psychological damage is done when the
syndrome all my life and was diagnosed last year victim cannot understand why he or she is being
in 2011 by a qualified professional at the age of 47. bullied. This was my case — I never understood
why! So I alienate people, and they alienate me as
I now know why I have been like this, now “odd” or “different”. This is what brought about
fitting into place and making partial sense, like a my bullies: Asperger’s syndrome and asthma.
jigsaw puzzle, for the very first time. I now know
why I was a quiet, withdrawn child who could I paid more attention in school to the trains
not make sense of the human world. I know why passing my classroom window. I could see a
I was terrified of absolutely everyone and the railway station nearby. Every time I was in school
whole world felt like my enemy. I felt like an alien (not everyday) I would watch the trains speed into
trapped in a human body, wanting so desperately the station. I’d watch people on the platforms,
to escape my existence. count how many there were waiting for a train.
The trains were every eight minutes. I would
I know why I stood in one corner of a count how many carriages, watch the guard
playground and froze like a statue, terrified of open and close doors, imagine I was a passenger
being noticed by others while they all played getting on it, right there on the platform and
along with their friends. Playtime was no travelling on it as it moved off, seeing what
playtime for me, but a feeling of exposure for all they might be seeing. I knew a lot about trains,
to see me. If a football passed by me, I’d quickly different syles, sounds, looks. A daydreamer, I was.
13
 an article (continued)

Inevitably, truanting came into being, simply write was a problem, which I always eventually
because I had too much physical assault and won through. I felt like I was having to lie
too many bullies. I was too terrified to explain endlessly, just to save my life from torture. I’m
my sufferings to anyone, even my mum or dad, sure my Asperger’s helped me through this as,
because of repercussions — in case the bullies in the end, this routine, being difficult, became
found out and got me even more. Truanting easier and easier and I became an expert a
and Asperger’s syndrome have moulded my wriggling my way through loopholes and never
life forever. I have been truanting or avoiding got caught. Yes, this routine was very often.
everything, ever since I was young.
I’ve never been able to make friends in my
I am alive today, writing this because I life. Whenever I try, I get into some sort of unjust
have saved my life, my own way, truanting and trouble. I had no school friends, boys or girls, in
avoiding. Truanting became a thrilling part of any year, ever. No teenage friends as a teenager
my life, exploring different London locations on and no adult friends. Asperger’s syndrome has
different days, usually by bus. I would pretend to denied me a social life completely. It’s agony
go to school as usual, and then before reaching for me, when I notice on the streets a group of
the school gates, not go in and instead, proceed teenagers, in the sense that I don’t know what
to the nearest bus stop. I’d get on a bus and travel that’s like. To be with a group of friends and
for 5p up to its destination, get off and walk share each other’s interests. It’s torture to know
the streets, which were places full of shops. It this is my only life, running out of time, and to
would be a very long day, alone. I went to toy be socially starved of everything good that life
shops I used to be familiar with and sometimes has on offer. I can only go as far as imagining
buy a few joke novelties. I’d then walk to the what it is like to socialise. I can never penetrate
nearest parks and hang round the swings and that socialised world that everyone else makes
roundabouts. I was still always in my school look so easy. It is the most difficult thing in my
uniform, but unaware that I was, and always life to accomplish. How is it done? I prefer to
alone. It’s amazing how nobody reported me, a ride my bike, or go for long and peaceful country
lone kid in a play park on a school day! However, walks for four or five hours which eliminates all
at that time, I never felt lonely because of my painful, longing emotions.
escaping bullies and physical and emotional pain.
It instead was a feeling of freedom, and was also Recently, I amazingly met a woman who I
very exciting when truanting. Time took its time, thought was going to be my friend. She appeared
when looking at my watch as I would daydream interested in me at first, as we went out to a café
while on a swing. Eventually the time came together, she visited my home and I her home,
round to leaving the park and make my way back we walked in a park, she held my hand and even
to the bus stop and make my way home, carefully gave me a kiss. Two days later she didn’t want to
judging the time it would take to get back home know me any more. What was it that put her off
to make it in time for when school was out. Of me? I kept calling on the phone and she kept on
course, making it look like I had gone to school making up excuses to avoid me. Was it something
to my family, when I certainly had not. I kept this I said that put her off me: Asperger’s syndrome?
secret well. None of this, I realise today as I write A mystery! The worst thing was not the leaving
this, was my fault. It was a system that let me but my mind thinking I’ve now got security of
down. However, guilt gradually set in, making some kind, and then I haven’t. Like a dream I
me feel sad for what I was doing. Wishing I could thought was coming true, and then it did not. I
say sorry for deceiving my family, though I felt felt abandoned, again. And the rope was starting
I had no choice at the time. One thing led to to climb, got cut loose, and there I am, right
another: not going to school meant I had to make back in the jungle again, lost and lonely. What
up forged letters to the class teacher, pretending is it like to have a girlfriend? This abandoned
it was from my mum, and then to think what to shock jolted me on a wild goose chase, chatting
14
 an article (continued)

to women everywhere in the hope of finding Asperger’s syndrome stopped this from
myself a partner, and it landed me in a police happening in my life; it never happened. How
cell. I’ll explain why. In November, I had an idea unaware I was of the multitude of suffering that
of giving Christmas cards to retailers in shops. lay ahead in the future for me. The vulnerability
Being Asperger’s, my personality has been very in me that created a target for bullies.
naïve, not to say that all who have Asperger’s are,
and I did not know of repercussions, or did not If one is successful, they just happen to be
think ahead of what might happen. So I gave lucky, like the lottery. If one is unsuccessful, they
out cards to various women in shops at the till just happen to be unlucky, like someone who
wishing them a happy Christmas. A sweet little is killed in a plane crash. Lucky for some has
pink card with a kitten on the card cover with a always been. Unlucky for some has always been.
polite message inside reading “Happy Christmas Life is not fair for me, as with some others. My
to a beautiful woman”. My idea was so that they diagnosed Asperger’s syndrome has destroyed my
remember me in a positive way. Obviously this life.
was not to be. I was in a then very happy state
of mind, so I thought I would be spreading my I have always been tidy, have had a tidy room
happiness. Not so. Several women complained and love discipline and order. This is maybe why
about me, and I was arrested and put into a police I like trains so much. There is a perfection in
cell. I was asked by the police, “Was I aware their running along a perfect track of iron rails to
that I could be putting fear into the women by which there is perfect control. Straight, balanced
giving them Christmas cards over the counter?” and smooth. I am an artist and I love perfection.
I said “Not at all.” And all this came to me as a Something my life has never been: perfect!
big shock. So, once again, instead of me making
friends, I made enemies. My Asperger’s probably How quickly the chances of marriage,
to blame. As a person I’m quiet, withdrawn, and children and being a dad diminish. My chances
shy, so I thought how did this freak them out! I are gone, a wish I will now carry to my grave. If I
did not understand. could have my chances again, and to be born in a
normal condition, more positive and extroverted,
Amazingly, I’ve been tied up and gagged, I could then find out what a real life would have
knocked unconscious, been beaten, punched, felt like. I deserved a normal life too, like others,
mugged, traumatised loads and arrested for being but did not get, because of my condition, so I
warm-natured, gentle and inoffensive. Loneliness missed life. And instead of the respect that I so
has followed me my entire life! I am abandoned much deserved as an Asperger’s syndrome person
from society. I guess society will only respect me needs, I received misunderstanding and hostility.
if I’m walking down a street with the “correct”-
aged woman on my arm, and if they don’t detect It’s an ignorant society that labels itself
my Asperger’s. They all see lone innocent men as modern, but underneath all that “glitzy glamour”
threats: I’ve even had death threats sent by text. they are all still very primal minds that never
learn anything that’s outside of their narrow
The world of the human race and our rules vision, as in historical times. They might find
and regulations of our modern era are difficult something wrong in us, but we can all see the
for the Asperger’s sufferer, and for myself, it defects in the rest of them, so-called normal
has always been beyond difficult. Everything is people . . ..
hard for everyone, so how much harder is it for
someone living with Asperger’s? What you see on the outside of me isn’t true
— but what you don’t see on the hidden side is
It is vital that children socialise young at the truth.
school, where friends usually begin, so that
they can carry on progressing with confidence. (We all unite and bond as one happy family.)
15
 an article

Getting to the heart of the head — my experience in

using CBD oil for mental well-being

by Virginia

The last five years have been an enlightening avoiding his embarrassment, but precipitating
personal journey. I qualified as an English mine, and banishing me to the loo with a massive
Teacher in 1997 and after some trial runs in meltdown. Another time I started a panic about
schools which did not quite tick every box a pandemic when, after a little cough, I made a
as “correct”, following the birth of my son, quip about my cousin visiting with bird flu. Not
I settled into a comfortable niche at a local so funny when the next day the Headmaster
independent school. I worked; it worked. The hauled me into his office, as a parent had
school run belonged to both of us, rolling up to telephoned to berate him about endangering the
our respective positions within the educational children! I could go on with a list of workplace
establishment every morning for twelve years. faux pas, but they are ignominiously numerous.
Our coinciding holidays avoided the clash of
work and home that often offers a Hobson’s The point in revealing my ineptitude will
choice for the working mum, torn between child shortly become clear. Until 2013, I soldiered
and career. Sounds idyllic doesn’t it? on, a strange dichotomy of all-star results but
with my foot firmly in my mouth, and my desk
Yet in reality, even disregarding the sheer looking like an explosion had happened. Every
mountain of preparation and marking that comes day I smiled serenely to mask the storm inside.
as a teacher’s inevitable burden, even disregarding Every day I had blurred vision, headaches,
the indisputable fact that, no, the long summer crippling stomach pain, and although I floated
holidays do not compensate for the exhaustive along the corridors in co-ordinated clothing,
onslaught known as “the teaching term”, things I felt somehow displaced, surreally hovering a
were far from easy. few inches above the floor. When I read texts
out loud, the words blurred and changed shape,
Despite being a high achiever academically, dropping off the page. I survived on painkillers
for my whole working life I had struggled. At and diet fizz to combat the agony and perpetual
school, I struggled socially, but found my comfort fatigue. Soon I would reach crisis point.
zone with peers and projects. At work, however,
I could never decipher the rules. Others seemed Suffering from stress, I left school in 2013 to
to pick up cues effortlessly, able to multi-task, fly solo as a private tutor. Even I was surprised
process information, remember to-do lists and by my rapid success, moving quickly from three
laugh along with colleagues. For me, it was students per week to twenty-eight regulars. Yes,
always an extra effort. I practised conversations it meant a lot of hard work, as well as hours
in the mirror, I rehearsed religiously for scenarios where I commenced the majority of my work just
that might occur, where I now realise others as others were winding down in the evenings.
simply improvised. I could think on my feet However, I absolutely loved it.
in lessons; I fell down over staffroom politics.
Once, when I was asked to take the minutes of My moment of epiphany arrived when I
a meeting, I slavishly transcribed every single took on a home-school student with Asperger’s
word, not realising that some of the “banter” syndrome. It was like looking in a mirror and
needed editing to avoid the swift dismissal of the it slowly dawned on me that this might be
head of department. The minutes were retrieved the reason for many of my own struggles. A
from pigeon-holes in the nick of time, thus professional confirmed the suspicion for me, and
16
 an article (continued)

a visit to the optician’s also confirmed that I had Of course, for some there may be unpleasant
Irlen’s syndrome — a scotopic sensitivity and side-effects, because everyone is different, and
perceptual processing disorder. Things began to there are still some questions to be considered
fall into place. in the medical industry about its efficacy and
safety. But for me it is unquestionably successful
But despite feeling less stressed in the in reducing anxiety and providing a sense of
workplace, I still suffered from panic attacks and well-being that I can honestly say I have never
depression. Even though my work was essentially really experienced before. My head is calmer,
my hobby, I was forever fully wound; often wide I am not suffering from regular panic attacks
awake when I should be sleeping. I still suffered and I feel able to prioritise tasks more easily.
crippling pain on occasion (I also discovered Most importantly, I am relieved from oppressive
a gluten and wheat intolerance). I still used moods which could be very debilitating when
painkillers and a cocktail of sleeping aids. Was they struck. I can’t tell you that it is definitely
there anything that could take away the constant the result of CBD oil alone, or whether the
feeling of being overwhelmed by life? Would improvement is simply a co-incidence, but I can
anything be able to rein in my fuzzy buzzy brain? tell you that there is an improvement and I have
had no ill-effects. It isn’t that costly, although to
In despair, I turned to an internet support me there is no price on peace of mind. It doesn’t
group for women with autism. Regular chats get me high, but, hey, you can’t have everything
gave good advice and re-assurance, and I was can you?
persuaded to try CBD oil at the suggestion of one
of the women. I began by taking five small drops
a day, under the tongue, and then increased to References:
five in the morning and five at night. After two to
three weeks, I began to feel the benefits. 1) NCBI Pub med.gov online ‘Sativex in the
management of MS related spaspticity’ Epub Jan 19,
CBD is a cannabinoid, and is derived from 2015.
the cannabis plant. But before you question the 2) NCBI PMC Neuropsychopharmacology ‘cannibidiol
legality and ethics of this, I can assure you it is reduces the anxiety induced by simulated public
legal and available in the high street. I buy mine speaking in social phobia patients.
from a health-food store. This is because it does
not contain THC (tetrahydrocannabinol), the 3) NCBI Pub Med.gov J pain Symptom manage, epub
Nov 5th 2009.
psychoactive ingredient that gets the marijuana
user “high.” There have been some reports of 4) NCBI Pub Med.gov J clin oncol epub Spetmeber 2006
CBD oil causing users to fail drug tests, but this
is likely either a rumour, or they are buying their 5) NCBI pub med.gov Exp Dermatol. Epub June 2016
substance from less-than-reputable suppliers.
6) NCBI pub med.gov Trial of Cannibidiol for drug-
Growing scientific evidence suggests it is highly resistant seizures’ N Engl J med May 2017
beneficial in some key areas: relieving pain1,
reducing anxiety and depression2 , alleviating 7) NCBI pub med.gov J psychopharmacol.nov 2014
cancer-related symptoms3 including those caused
8) NCBI pub med.gov JCI Insight Jun 2015
by treatment4, and reducing acne5. Studies
also show that it might have neuroprotective 9) NCBI PMC subst Abuse May 2015
properties (it has improved symptoms in those
with epilepsy6 and Parkinson’s7 for instance). 10) NCBI Pub Med.gov autoimmunity Mar 2006
Furthermore, it may help with heart health8, and
11) NCBI Pub Med.gov J neuroimmune pharmacol Jun
though more studies are needed, it may help with 2015
substance abuse disorder9, diabetes prevention10,
tumours11 and even have anti-psychotic effects12. 12) NCBI Pub Med.gov Schizophr res Mar 2015
17
 two letters and a poem

A letter about a book Hello NAS,

a question about the Manchester Student

from Anne-Laure Union replacing clapping with waving was asked
on Question time.

I have not contributed in a while but here is I quote from Question time panel-member
something I would like to share with readers of George Mpanga, “It is not fair to just laugh down
the Spectrum. By the way, I love the new name. difference”. Even though George and another
panel member (Emily Thornberry MP) explained
I recently wrote a little book about who I am, that some individuals like some on the autistic
entitled The joy of abnormality. I am not telling you spectrum are sensitive to noise (for example
about it to increase my sales figures but because clapping) this difference was de facto laughed
of the effect it has had on others, and on myself. at by the other three panel members (Claude
Littner, Isabel Oakeshott and David Gauke MP)
Family, friends and even colleagues are and the chairman David Dimbleby and many
starting to talk about Asperger’s, both with me members of the Question time audience.
and around me. I received a few emails thanking
me for writing and sharing my story, from readers Has the NAS viewed this programme (if not,
who could understand things about themselves for please do so)? Has/Will the NAS made/make any
the first time. This drove me to tears more often representation to the BBC and/or to those who
than not but knowing the journey of discovery took part in the programme?
will be easier for some because I wrote about my
own is worth the pain a thousand times over. I am on the autistic spectrum but I do not
have this auditory difference. However . . ..
So this is my message to you: speak up. Speak
up! Too many of us find out about our difference Michael
too late in life, after too many setbacks.

Find happiness in being who you are. And help

others along the way, because we are still united.

New cover colour

notice by the Goth

From April, edition 98, the title on the cover,

called the masthead of the magazine, will change
from black lettering to the new purple lettering
— the same colour as this notice and all the other
purple text in the magazine.

I think this will be the last change for the

new brand. I hope you like the change, and of
course let me know what you think.
18
 stuff you might like to know about the Spectrum

The rules of the Spectrum

(contact information for the Spectrum is on page 2 and

again on page 20)

1) The Spectrum is funded by the NAS and 9) If you phone and leave a message on the
readers’ subscriptions, and is independent of machine, please speak slowly and clearly and
the NAS. Although it was called “Asperger spell uncommon words, as the line isn’t very
United” it aims to be for the whole of the clear. Please give any phone number you leave
(reading) autism spectrum. That is, the twice for the same reason. Remember to give
concerns and joys of any autistic subscriber your postal address so that we can find your
can be printed, not just Asperger’s. record.
2) The Spectrum is quarterly, published in 10) You can sign up for an email notifying you
January, April, July and October. If you whenever a new edition of the Spectrum is
do not receive a copy when you expect to, posted on the webpage above. Email
please contact the magazine. [email protected]
asking for the notification by email and please
3) Pieces that appear in the Spectrum are credited
include your full name, postcode and let us
using the author’s first name only, unless the
know whether you want to subscribe to the
author requests something different. This is
the paid paper edition too.
done to protect your privacy.
11) If you want to unsubscribe from the paper
4) The Spectrum administers the copyright of
version, inform the Spectrum and include your
everything that appears and it does this on
postal address. Or to unsubscribe from the
behalf of the authors.
email notification, include your email address.
5) The NAS plans to expand the Spectrum’s
12) If you want to resubscribe (or subscribe for the
presence on social media, so if you don’t
first time) inform the Spectrum and include your
want your contribution used in this way,
postal address and fee (for the paper version)
please make that clear when you submit it.
or email address (for the email notification).
6) The NAS would like to keep in touch with
13) Book reviews are the most popular thing
you about NAS services, support, events,
with readers of the Spectrum, so please consider
campaigns and fundraising. If you want to
submitting one. They can be about any book,
hear from the NAS, you can opt in to this
not just books about autism. Also, they do
on the NAS website. The NAS will only
not have to be short (the Goth keeps most
contact you in the ways you want.
of his reviews short to leave more space for
7) If you subscribe to the paper edition and other writers). If you do not want your review
move house, please inform the Spectrum and to appear in other NAS publicity about that
include your old address as well as your book, please make this clear.
new address. Even if you’ve paid for the
14) Although each issue is themed, submissions
Royal Mail forwarding service (or another
on any subject are welcome. Only some of
forwarding service), you still need to inform
the letters and articles will follow the theme.
the Spectrum that you have moved address.
All submissions may be edited, especially
8) You do not have to be a member of the NAS for privacy, libel, and for fitting the space
to subscribe to the Spectrum. available.

19
The Spectrum
magazine

Spring!

by Tony

I’ve noticed (and made the connection this year) migraine (damming of energy/material as with
between certain symptoms I’ve been getting frozen river and spring melt): I’ve suffered with
for decades that others also seem to get, but these headaches for years but never until now
without the insight I seem to have. For instance, associated them with the seasons.
I have very itchy skin at the moment, which
seemed to start at the hips and buttocks and All of this I think indicates that the bodies
moved down to the shins and now my ankles. of humans and animals react to climate change,
I’ve heard people complain that they think this in the same way that plants do. The latter
is down to their washing powder and sensitivity can’t tell us why they are reacting as they do
to it in some people more than others (those on or even what they are reacting to but maybe
the autistic spectrum and possibly others, for our reactions can tell us what is going on with
instance). them too. I remember a weatherman on TV
saying that the animals had been caught out one
I also noticed with the advent of spring that year, by a sudden unexpected flurry of snow,
certain aches and pains have resurfaced, similar whereas I believe that they were reacting to the
to those described by people who claim to be lengthening of the days (as plants do) and not the
able tell a change in the weather for the worse cold spell. Maybe this explains depression (SAD
(atmospheric pressure? Change in dampness — seasonal affective disorder) and wanting to go
amount in the air?). Coupled with this, I noted to bed all the time as opposed to insomnia (sap
a feeling of frustration with my body (sloth?) rising) and unexpected urge to wake up and stay
and increased production in the ones-and- awake?
twos department, culminating in release of
this and return to normal flow, topped with a Has anybody else noticed this?

The Spectrum, c/o The NAS, 393 City Road, London EC1V 1NG
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Except where stated, all material © The National Autistic Society 2019