PARTNERS OF THOSE ON THE AUTISM SPECTRUM
It used to be thought that people with Asperger's
syndrome did not marry, because of their social difficulties.
This is not true; there may be many undiagnosed individuals with
Asperger syndrome who have partners and children. Some may manage
marriage and family life very well, others may have great difficulties.
Living with a person with Aspergers syndrome can be very difficult
because of the very subtle nature of this syndrome. There is no
physical signs from just looking at someone, and it can be hard
to explain to friends and family that peculiar behavior is not deliberate.
What partners say
The following are direct quotes taken from case
histories written by partners of people with Asperger syndrome...
"All the unwritten rules of behavior were
puzzling to him ... Something which you think is obvious, is not
to him ... lack of perception about other people's intentions ...
he does not recognize the needs of others ... He did not seem able
to project his mind into a hypothetical situation, or put himself
in somebody else's shoes to see what it would feel like ... He cannot
see that his children should be distressed because he does not visit
them for weeks. He signed their birthday cards with his name until
told they would prefer him to put Dad."
"Anything he cannot face he throws away,
and the consequences are horrific ... He keeps copious lists of
things to do, but I have to tell him what they are. If I am not
there, he loses the lists ... His social behavior is appalling;
falls asleep in company, makes rude noises."
"... the paradox of an apparently kind and
gentle man behaving with cold cruelty, and then being distressed
and surprised by the result."
"... he fails to recognize or understand
other people's feelings ... an inability to recognize when behavior
is not appropriate."
What can you do for yourself?
The first step in coping with any disorder is
understanding. This can be especially difficult if your partner
has Asperger syndrome; one very successful and independent woman
with Asperger syndrome describes herself like an anthropologist
on Mars! It can be difficult to understand that apparently hurtful
behavior by your partner may not have been meant that way, but may
be due to an inability to read your thoughts and feelings. You may
need to be more frank and explicit than you would like, in telling
your partner what you are thinking and feeling and what you need
him/her to do in response.
Because Asperger syndrome can be seen as a disorder
of insight into thoughts and feelings, it may be very difficult
to engage your partner in the sorts of discussions that marriage
counselors or family therapists use. Indeed, such therapists may
not have heard of Asperger syndrome and may need information from
you in order to avoid misunderstandings. You may like to think about
other approaches instead - perhaps it will be more useful to talk
to a counselor on your own, to have a chance to think through your
feelings and decide possible coping strategies.
In brief, the following three steps have been
useful for some partners:
i) Contact with others in the same position, for
understanding listening, support and advice
ii) Counseling for yourself and your family
iii) Consider whether diagnosis
What can you do for your partner?
As well as your partner having difficulty understanding
your needs for emotional closeness and communication, it may also
be hard for you to understand your partner's needs. He or she may
be interested in things that seem very boring to you, or may find
apparently normal social situations very stressful. Try and remember
that he/she may not be able to read all the social cues which you
understand without even trying. So getting very emotional (even
when you have every right!) may not be the best way to get through
- while a calmer, reasoned discussion (even writing things down)
may work better. Avoiding personal criticism can help; one partner
suggests a more impersonal approach, eg instead of saying "You
shouldn't do that", saying "People don't do that in social
It may be hard for your partner to change from
routine, and he/she may need plenty of notice when such disruptions
If your partner acknowledges his/her social difficulties,
it may be useful for him/her to see someone who knows about Asperger
syndrome and could offer practical advice, or social skills pointers,
rather than more insight-centered talking therapy.
Most partners often feel very responsible for
their husband/wife. It is important to acknowledge that there is
choice connected to that responsibility. You are not responsible.
If you choose to take on responsibility for others, decide on how
much and when you feel it is appropriate.
Look after yourself
Often partners spend so much time looking after
others, that their own needs are not acknowledged by themselves
or others. Decide what you want and how you can get it. For example,
where can you go for conversation, support etc. Take time out to
pamper yourself - whatever helps to relieve your stress.
Talking to someone who understands
Asperger syndrome is a complex condition, and
it is important that support is informed and understanding of these
complexities. There are partner groups in some countries and various
areas, and these can be very supportive. The benefit in talking
to someone who understands should not be under-estimated. Your nearest
autism or Asperger Association can tell you whether there is a partner
group in your area.
Acknowledging that your partner will "not
get better", or be transformed into the person you thought
they were, can sometimes help, although this is also difficult.
Certain behavior can be modified or changed, which can make daily
life less stressful for both you and your partner. For example,
routines and agreed timetables can help, as can looking at how you
talk and what language is used.
With acceptance of the condition comes a range
of other issues, such as grief and the realization of what is not
going to be. For some, there will be a feeling of disappointment,
loss and unfulfilled potential. Talking to a counselor can really
help - they can listen and enable you to explore the issues, emotions
You are not alone, although it may often feel
as though this is the case. Professionals are getting better at
recognizing the condition and developing appropriate service - although
this will often seem too slow for many needing help now. Use what
help is available, through a partner support group and/or Counseling
For many people, the realization that their partner
has Asperger syndrome, often comes about when a child receives a
diagnosis of being on the autism spectrum. For some, this time
will be like that of a bereavement, and the grief felt for your
child will be compounded with guilt and a lack of support from your
partner. Taking time to talk through positive strategies with others
can be a positive process. The feelings of not being able to change
things can be very frustrating. It is helpful to look objectively
and decide what can change and what will remain constant.
Look at your domestic routine
Try and see what structures may help and what
may hinder. For example it may be important to agree how meal times
will be conducted (eg sitting down together at the table). To be
rigid on all times (eg we will eat at 6pm), may be more difficult
if you cannot always meet the schedule - dinner at 6.15pm may cause
stress to both of you.
Be clear and explicit about what you want
Do not leave ambiguity in your statements, and
do not assume your wishes/ emotions are acknowledged and understood.
For example it may not be enough to remind your partner that you
have family over for a meal. You may need to go through the evening
in detail, explaining what you want him to do, and not do, eg greet
everyone once, and do not go to bed before the guests leave.
Ending the relationship
This is always an option. It is important to get
legal advice so that you understand the financial and practical
implications of separation. Many solicitors will offer a free 1/2
hour initial appointment, and free legal advice is available in
many countries, although this may depend on your income level. Advice
from a legal professional is exactly that - advice. It does not
mean you have to leave, it can just help eliminate the unknown.
Counseling can be helpful to enable you come to a decision.
[These notes were compiled by trained counselors
with expertise in supporting couples where one partner has Asperger
This information is reproduced with the kind
permission of The National Autistic
Society who have many useful fact sheets on their site. Copyright
is retained by www.autism.org.uk and their permission must be obtained
to reproduce their material.
to read personal stories by adults with Asperger's syndrome.
Click here to go to the
home page to view the full range of autism fact sheets at www.autism-help.org