With the help of questions posted by some church youths, I
have created this survey in preparation for a sharing on autism and inclusion.
Below are what I found to be illuminating and hence helpful answers. Note that
these answers have been edited for brevity and grammar. Although the survey
addresses special needs in general, the respondents are mainly from the autism
community (probably due to my circle of contact). Parents are given the option
to answer on behalf of their children.
Brenda Tan
Writer of “Come into
My World: 31 Stories of Autism in Singapore” and “MY WAY: 31 Stories of
Independent Autism” (www.come-into-my-world.com).
1a. How does it feel
like to have special needs?
Sad
Out of place
Frustrating. People think we are stupid; other times they
avoid us like something is wrong with us.
Life feels like a struggle everyday
I don't like it. I'm different.
I feel like the whole world is different from me. Like, I am
the ultimate weirdo.
1b. If you are a
parent - how does it feel to have a special-needs child?
Sad n depressed
Devastated
Alone. At my workplace, no one has a special needs child.
Very disappointed in friends or relatives who are not
willing to be more forgiving or understanding.
Very tiring
Stressful
2a. How have people
been unkind to you?
Ignoring me
Excluding me
Whispering
Staring at me
Showing unhappy faces
Refused to play with me or befriend me
Laughed at what I said.
Bullying Ostracizing Exploitation Criticising me Tell me
lies Gang up against me Gossip about me
I was bullied from Primary 2 to Sec 2.
People assuming I can’t do things, or making fun of me cuz I
can’t do things
When I was a kid I just assumed I’d go to prison because
everyone said I was bad.
2b. Parents:
They make remarks that make my heart cry.
Close relatives barred their children from playing with my
special-need child.
Called him names e.g. stupid boy
School mates hv bullied him; beat him with ruler, pulled his
shirt till it tore, taken his stuff, including money for school camp.
I get people’s stares when we are outside, and I thought
this is not how it should be.
3a. How have people
been kind to you?
Listening
Understand my different interests
Understand the difficulty
Offered me advice on how to improve my social skills.
Accepting me Listening to my struggles Commending me for my
strengths and good work Give words of encouragement to press on
Be seen with me.
3b. Parents:
With smiling face, replied "it’s fine for me" when
my son giggled in public.
Just simply let it be and keep quiet is being kind, instead
of being judgmental.
Help to look after him
Included him in their activities.
Looks of understanding, smiles, telling me “never mind”
after an incident caused by my son, coming forward to offer help and words of
encouragement
Making an effort to interact with our child.
4a. What difficulties
do you face?
Isolation - eat lunch alone most of the time.
Can’t keep up with conversation flow (topics change too
fast)
Difficulties in making new friends
Limited conversation topics
Expressing my thoughts
Rigidity, meltdowns
Sensory issues
Career prospects. Being automatically rejected without even
a fighting chance.
I cannot understand the world & society I live in.
4b. Parents:
I cannot always be around for my son.
Financial pressure
My daughter’s unstable mood n emotions.
My Son sometimes grabs food or things he likes from people.
He may floor when he cannot get his way and he may refuse to alight from the
bus when we have reached our destination. His obsessions and impulsive
behaviours means that I have to be very vigilant when I’m out with him.
Making friends is a huge challenge for one who is not very
verbal. A child trapped in a man's body when seen from the outside can be quite
intimidating for many. He is 22 but has no friends.
5a. How do you cope?
I stop caring about it (making friends). I occupy myself
with things like a book or a charged phone with data plan when I go to social
events.
Observe what neurotypicals do and emulate them
With help from parents, teachers, assigned buddies in class,
church friends.
I don't know. I just deal with it.
I don't - it's a struggle most of the time
5b. Parents:
Quit my full-time job.
Activate whole family for help
Lower expectations
Remind myself to keep calm
Day by day and prayers.
Try to see difficult situations as an opportunity to educate
the public - to increase their awareness and understanding.
6. Do you feel you
are living in an inclusive society? Why/why not?
a. Yes
I see efforts from organisations to be more inclusive, such
as SG Enable, ARC, SPD and their employer partners.
Yes.. in certain areas. Especially my boy’s school and
teachers.
From when we started, awareness has certainly increased a lot,
with a lot more activities n events organised around persons with special
needs.
b. No
People still make jokes about special needs.
When we stim, we’re “crazy”.
Many organisations in Singapore still have not jumped on the
bandwagon to hire special needs people and even for those that have, employees
on the ground are not trained to manage and help us.
Many in society still lack awareness, education and empathy
for special needs, and still exclude us from their circle of friends and social
activities.
They don’t truly understand, or want to. Because they think
it doesn’t involve them personally.
People are impatient by nature and expect services to be
fast n prompt due to time constraints or stressful demands from society but
special needs people just can’t cope.
Starting from primary school, children only want to friend
those who are normal. They are unkind and bully or ignore those who are
different.
Many childcare centers & kindergartens are not
equipped/trained to take in children with special needs; there’s no truly
inclusive mainstream schools such that children with special needs can learn
& play alongside neurotypical children so that both sides gain better
understanding & acceptance of each other. Integration should be done as
early in life as possible. Should not be the case of society trying to include special-needs
people later on in life.
For employment, we are still a long way. Cause what we are
doing now is really retrofitting existing systems n structure to accommodate
them. There is not concerted effort to build a system with them in mind.
For our children to co-exist in the system, there is a need
to change mindset n attitudes. Our kids are able. However, if people do not
have the right mindset n attitudes, inclusion will always be lacking n lagging.
Our kids will never be safe. Our kids will always be tormented psychologically.
I would say our society is maybe increasingly tolerant but
certainly not inclusive yet. I feel that people are generally uncomfortable
with the unusual behaviour of individuals with special needs and still prefer
to keep a distance.
Nobody helps me unless I fit their version of what a special
needs person looks like.
7. What is your
greatest wish/hope?
To be accepted
Find a permanent job with good and patient employer
Everyone won’t be stressed over the ‘rat’ race so that one
can take own time to do what is best in every situation.
A robust support system, e.g. buddy system at work.
More trained professionals for special-needs children in
affordable fees
Give my son a chance to study/ work.
More special-needs friendly churches.
I wish people can accept that our children have a condition
which they didn’t ask for.
For a kinder, more inclusive world.
8. How would you like
to be treated?
Treat me like a normal person
With respect.
Understand that at times we need some room during meltdown
I hope people can be nice to me when my behaviour deviates
from the norm, and just tell me how to rectify it.
With kindness. Communicate with me in a way that make sense
to me. Make accommodations for my ASD weaknesses. Give me direct feedback on my
behavioural issues and soft skills. Be patient with me. Be gentle with me.
Fair n kind
Like my needs matter.
I would like people not to assume n judge too quickly
I would like people to treat my child like a normal person,
not with lowered expectations. Lowering the benchmark/ expectations too much
underestimates what they can do and takes away their confidence and the chance
for them to push to greater heights, at their pace. i.e I have seen IEP in EIPIC
designed to be a routine, not much to motivate or inspire the child. More like
incubating the ideas to the child indirectly, "That is all I need you to
do", "I know you are not much capable."
Talk to me patiently.
9a. How can I become
a friend to someone like you?
Respond nicely if I initiate conversation, even if it’s
awkward.
Don’t keep talking with your own friends like I’m not there.
No small talk please! If we share interests, it’s a huge
bonus.
Chat with me.
Treat me to a meal, or I can treat you to one too.
Do NOT treat me as a charity case.
Ask me how it is like for me to live with Asperger syndrome
Share common interests, discuss interesting topics
Be open, genuine and sincere.
Give time and be patient.
Smile n stay cool
Ask and be understanding. Don't assume things, always ask to
be sure.
9b. Parents
Say hi to our children or give a smile
Patient n talk slower as his processing may not good.. more
understanding if he’s distracted from the topic
Start with knowing his name...his interests...involve him in
activities that he is interested in....
Come forward and talk to my child. He may not be able to
converse normally but you can still show him your desire to talk to him.
Go to the playground together. Play board games and nerf
guns together. Do sports i.e badminton, bowling, basketball and soccer
together.
Try to know what they want, what they don’t. Try to
communicate to them as much as possible.
Talk to her and friend her on Facebook and meet up with her
once a month
Engage them at their level.
Talk to him and try to interact with him directly instead of
going through his parents.
Respect that he can hear and is sensitive to people’s
reaction to him.
Let him feel he's not invisible which he seems to be to
others.
10. How can I help
you?
Just let me be me and accept that I am what I am.
If I ask for help, please don’t put me down for it. If I’m
having a meltdown, please stay away, and help keep other people away. And be
nice.
Just doing this survey is already a big help
Being an advocate or mouth piece
Ask if we can move forward in long queues?
WhatsApp n befriend my son
Introduce workshop, courses or outings for her.
More venues for special-needs kids to socialize.
Spread the awareness
11. How can the
church be more comfortable for you?
Touch on special needs
Be accepting of my ASD behaviours and don't take offence if
unintended
Give me direct feedback if you don't like my behaviours,
don't tell it through someone else, it is like gossiping
Listen to my issues and point of view. Do NOT jump straight into
telling me about God and the bible. Know my needs first. Otherwise, I would
liken it to you reading John 6 (Bread of Life) to a guy starving to death but
you never give him bread to eat.
Maybe by knowing more about the condition and its
manifestations and allowing for diversity in unity
Special needs are not talked about much in my church. Any
act of concern would be appreciated.
More talks/dialogues & raise awareness amongst neurotypical
church goers.
Prayers
People with special needs can be gathered for fellowship
once a month
I am not a Christian but I think a place of faith should
take the lead in demonstrating to their followers how people should love one
another and treat others the way you would like to be treated.
Be accepting of our special needs children
To me, the church should be our sanctuary.
