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contents On the Spectrum

News Update

Parents Chatback Tip on Identifying Moods & Feelings!

Me and My Sister Fathers Care Too!

My experience at a GP surgery

How to engage & improve Maths

with your child

Creatively Managing Stigma

From Child to Adult

Young Person & Adult Update

For Carers Old and New

10 Things Every Child with Autism

Wishes You Knew

Support Network in Tower

Hamlets

Autism Friendly Cinema

Screenings

Autism Awareness Week in Tower

Hamlets

Do you feel somewhat Invisible

Under pressure, when you are out and

about. You are not alone!

Do not suffer in Silence!

Families with Autism

Welcome

to Spring!

For families affected by Autistic Spectrum Disorders &/or

similar Developmental Delays (diagnosed or not).

Spring 2013

World Autism

Awareness Day 2nd

April

Tuesday 26th March

Open Day at Phoenix Saturday 30

th March at

the V & A Museum of Childhood.

Idea Stores and local libraries have a wide variety of practical &

informative books, as well as fiction for adults

& children. Just Ask

Where & Browse!

On the Spectrum Autism is not a continuum from mild to moderate to severe, but a spectrum condition.

Think about it like this. The autism spectrum is made of hundreds and hundreds of colours. Out of these colours, each individual will have their own personal selection, which while similar to others with autism will never be the same.

How disabling your autism is depends on your particular collection of colours. The key point to grasp here is that people with autism are not disabled - by their autism; but by the inability of the society around them to accommodate the way, that someone with autism understands the world.

Redlan1, Guardian 9th March comment

For Carers Old and New

You might have just found out that you will be caring for

someone with an Autistic Spectrum Disorder, or you

caring for someone for many years.

Contd. page 4

The Autism Show in

Tower Hamlets

Presentations, forums, information, strategies,

answers, advice, support, quiet & sensory

rooms etc. www.autismshow.co.uk

NAS members get a reduced ticket price.

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“If you find a place where you can relax and unwind, you should treasure it and use it.”

J E Robinson

News Update

The National Autistic Society (NAS) started a new campaign at Parliament in February hosted by Diane Abbott, MP for Hackney North & Stoke Newington, Shadow Minister for Public Health, (cross–party) to highlight the many issues that often prevent some people affected with autism from black & ethnic minority (BME) backgrounds from accessing the right Special Educational support & services when needed. Over 100,000 people living in the UK who have autism are from a black or ethnic minority. Despite this, individuals and families from these backgrounds affected by autism have told the NAS that they still battle to get support from their communities & local authorities. Many also lack emotional & practical support from their families due to little information & understanding of disabilities. A few people spoke about some difficulties faced by their families. There was also a short Q & A session – not long enough of course! This campaign is just a first step to understand, improve the impact of, and reduce the challenges faced by BME communities affected by autism!

To find out more or would like to share your story and experiences

please contact bmeproject@nas.org.uk

The event was a good opportunity to meet autistic people, other parent/carers and small community groups from various parts of London and further; give personal opinions and share our stories. Time was short, and the NAS plan an update later in the year.

Seema, Mark & Tayo

Transition Not all young people will get a service and others will (there are different criteria set for paid for support and level of risk) If they don’t meet the criteria they will be referred on to inclusive services. Which means those with Asperger’s and the more able may lose some services, as they get older.

Children with Disabilities’ Team & Adult Services, March 2013

Fathers Care Too! Two years ago, all I knew about autism was that it was an unfortunate thing that sometimes happened to kids. I’d heard rumours of what caused it and had a mental image of how an autistic kid probably looked & acted. That was as far as I’d ever bothered to go. I thanked my lucky stars that my baby was born mentally and physically healthy and well… I was not affected, so I felt no need to learn more!

Now it matters to me. Now I find myself wishing it mattered to everyone else as well! Contd. Page 4

Parents Chatback Tip on Identifying Moods & Feelings!

A parent of an 11 yr. old daughter whose condition causes huge

mood swings that can lead to very difficult behaviour. Mum came

up with some very effective ways of letting friends/family know

what mood her daughter is in. She used the traffic lights colours

– red, yellow and green to help her daughter show this to friends,

family & school. Together they made ‘mood’ bracelets using

beads and bands bought cheaply from the Early Learning Centre.

This young lady has dyspraxia so threading the beads also

helps her fine motor skills. A red bracelet means ‘don’t talk to

me’, yellow means “I will talk to you but don’t talk too much”

and green means “I am in a good mood”.

She also used ‘The Girls’ Book of Secrets: Shhh... Don’t Tell!’

“All the skills you need to survive and thrive, no matter what life

throws at you – in one super-cool book just for girls (and boys).” Contact a Family Wandsworth Newsletter Jan 2013

My experience at a GP surgery

On an occasion, I had to take my son to the emergency duty doctor at my GP’s surgery. My son had an eye infection and the doctor (an Asian lady) refused to look at his eyes. She said there was nothing wrong with him. His eyes were red and I told the doctor that it became sticky at night. He suffers from hayfever as well. Then she quickly wrote a prescription of an eye drop without looking at him. I questioned her, saying if there is nothing wrong with him, why is she giving him eye-drops. Then she got angry and told me, my son is messing up her room, I should take him out. Actually, my son was just playing with the toys in the room. Toys were there for young children to play with. I was very shocked by the doctor’s actions; and returned home feeling miserable. After that occasion, I refuse to go to that doctor whenever she is on duty. Rashida

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Different If Olu was different, who would I be?

I would not know you and you would not know me!

If Olu was different, it would change life a lot

I’d still be the same worrying sort! If Olu was different, I wouldn’t have the

time to stop and think I’d be climbing up the greasy pole with my

skills and abilities at work Just running around chasing my tail, trying

to play catch up in a world that doesn’t play fair

and really doesn't care If Olu was different, he’d be just like

everyone else and so would I This way we are unique and never just part

of the crowd Although he is a scary gremlin at times,

he’s very cute too He’s taught me to be more patient and

have a very different world view I now try to focus on what’s important –

the basics We still have fun just watching him grow

in his simple world without all our stresses

If Olu was different, I‘d still be a Mum and he’d still be my son!!!

But I would not know you and my life would be so blue!

© Tayo David, March 2011

shared by Families with Autism

Me and My Sister

.

Katie is always at the forefront of my mind. My earliest memory is of defending her. I was about 4; Mum was walking me to school when Katie ran into the road. A car swerved, Mum grabbed Katie; a little boy said “she’s a retard” So I hit him. The teacher said I shouldn’t have lashed out, but that he shouldn’t have spoken like that either. She understood, but many people do not.

No Different When you are young, you don’t know your family is different. I just talked and played with Katie, dragging her around the house the way sisters do. My birthday wish was that my sister would speak. When I was 12, I stopped wishing.

My parents were brilliant at protecting me and making my life as full as possible. I am even a Black Belt in Karate cos’ Dad worried I might be bullied cos’ of Katie and he wanted me to have the confidence to deal with it. I now know many people with disabled siblings grow up with a real resentment at the lack of their parents’ time and attention or at the way everything in life centred on one person, but I have channeled that differently. Katie went to boarding school at 7, from Monday to Friday. I got my parents’ attention, but we all felt guilty without Katie. We really appreciated the time we had together when she was at home, even when she was being so demanding. I’ve always felt responsible for her, which affected my career choices – I now work in the charity sector.

Prioritising My friends tell me that I’m not good at putting myself first. We had quick and easy meals in case Katie disrupted everything - and I’m still not used to the luxury of lingering over a meal. We’ve never gone to the cinema as a family and I would watch friends’ families sitting chatting round the table after a meal knowing that couldn’t happen with us. No one really understands what it’s like growing up with a disabled sibling unless you’ve experienced it. Meeting other people at a support group run by Sibs, a charity for siblings of disabled people was amazing. It sounds selfish, but it felt like it was about me for the first time rather than about supporting Katie or my parents. It is just as important to help the siblings, to consider their feelings and concerns about the future.

Future Worries Katie’s tall and quite heavy, she can be quite aggressive when she’s frustrated; so I worry for Mum & what the future holds. All our family have been on the receiving end of head butts, but it is worse when it happens to someone outside the immediate family. I remember Katie head-butted my best friend Holly in the face when we were 10 – I still feel sick when I think back to that. I am blessed that my friends have understood.

I love Katie. Katie will always be a huge part of my life. The future for me is a scary prospect as I consider the role I

will play in supporting Katie.

Sibs 01535 645 453 www.sibs.org.uk Edited from Enable, Sept/Oct 2012

Laura Smith is 29, lives with her mother and sister Katie, 27 who has autism and is non-verbal, affecting her communication and behaviour

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Fathers’ Care Too contd.

Now I find myself wishing it mattered to everyone else as

well. I find myself wanting to teach anyone who shows the slightest interest (though I’m not someone who ever really pushes info onto others) and yet, I have so much still to learn.

When people ask me, “What is autism?” I stumble and stutter. I try to explain it based on what I have experienced with Colin, but I’m not always able to find the words. I want to show them more than tell them. Telling them just doesn’t seem to be enough.

Whenever we go out in public and Colin gets wound up or says/does something inappropriate, I always struggle with how much I should share with strangers. “I’m sorry, he’s autistic,” doesn’t seem appropriate for so many reasons. Usually I’ll let him know he’s acting inappropriately & then pull him towards me (or ask him for a hug) and smile at the

stranger, saying, “He’s my special boy!”

Most know little about this condition (as I once did) picture a non-verbal kid, rocking and flapping their hands, avoiding any touch, etc. Most of you know that is far from true.

Short of putting a button on him (like the one above), I sometimes feel at a loss. But to do that would say that label defines him. He’s so much more. He’s silly, funny and he can be really caring and sweet. He’s smart too! He can already use a screwdriver with ease, not that we’re thrilled with this development! HE IS COLIN.

I told myself with April being Autism Awareness Month, I felt I should share a bit on this topic. Below is a favourite piece that reminds me where I need to be & what he needs from me.

10 Things Every Child with Autism Wishes You Knew

1. I am first & foremost a child – a child with autism. I am not

primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. As a child, I am still unfolding. Neither you nor I know what I may be capable of! Defining me by one characteristic runs the danger of setting up an expectation. If I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

2. My sensory perceptions are disordered. This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The environment in which I live often seems hostile. I may seem withdrawn or aggressive to you but I am just trying to defend myself. A “Simple” Trip To The Shops May Be Hell For Me”. My hearing may be hyper-acute. People talking, the loudspeaker and tills beep. Babies wail, trolleys creak, and fluorescent lighting hums. My Brain Can’t Filter All The Data Input And I’m In Overload! My sense of smell may be highly sensitive. The guy standing next to us hasn’t showered today, the baby ahead has a smelly nappy, they’re mopping up with cleaning stuff….I Can’t Sort It All Out. My sight is the often the first sense to become overstimulated. The fluorescent light is too bright; it makes the room pulsate and hurts my eyes. Sometimes the light bounces off everything and distorts what I am seeing — the space seems to be constantly changing. There’s window glare, too many items for me to be able to focus (I compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion.

For Carers: Old and New:

Whatever your situation, there will be times when you feel overwhelmed, & do not know which way to turn, when you feel that all you need is a little break. Prepare yourself for those moments, make sure, you have good support & that you know where there is helpful information and a listening ear. Financial: As a carer you may be

entitled to Carer’s Allowance Professional: You may need a regular

GP, a psychologist, or a therapist input for the person you care for or yourself.

Informational: local support groups, online information & specialist charities

Emotional: When you feel unduly stressed; remember you need to look after yourself in order to be able to look after others. You might wish to visit a counsellor or find a stress management course. Could be yoga or relaxation classes etc.

Respite: There are several respite choices for you and them! Use them…

Manar, Living Autism www.livingautism.co.uk

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Don’t Let Autism

Cause You To

Lose Sight Of

The Whole Child.

Self-Esteem Is

Crucial.

3. Distinguish between won’t (I choose not to) and can’t (I am not able to). It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me across the room, I hear: “*&^%$#@, Billy. #$%^*&^%$&*…” Instead, come speak directly to me in plain words: “Put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me.

4. I am a concrete thinker. This means I interpret language literally. ”Don’t tell me something is a “piece of cake” when there is no dessert in sight & what you really mean is “this will be easy for you to do.” If you say, “It’s pouring cats and dogs,” I see pets coming out of a jug. Just tell me “It’s raining very hard.” Idioms, puns, and sarcasm are lost on me.

5. Be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused so right now those words are beyond my ability. Watch my body language, withdrawal, agitation etc. Or I may sound like a clever clogs, rattling off words or whole scripts beyond my developmental age. I have memorized these from the world around me to make up for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, other people. It is called “echolalia.” I don’t always understand the context or the words I’m using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am visually oriented. Please show me how to do something rather than just telling me. Please show me many times. Lots of repetition helps me learn. A Visual Schedule is helpful as I move through my day. It relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, & helps me manage my time.

7. Focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn where I’m constantly made to feel that I’m not good enough & need “fixing.” Criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to

do most things.

8. Please help me with socialising. It may look like I don’t want to play with the other kids on the playground, but it’s just that I simply do not know how to start a conversation or enter a play situation. Encourage other children to invite me to join; I might be delighted to be included.

9. Try to identify what triggers my meltdowns. Meltdowns, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log - noting times, settings, people, activities. A pattern may emerge.

10. If you are a family member, please love me unconditionally. Banish thoughts like, “If he would just…” & “Why can’t she…..” You did not fulfil every expectation your parents had for you and wouldn’t like being constantly reminded of it. I did not choose to have autism. Remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. I promise you – I am worth it.

Finally, three words: Patience, Patience, Patience. Try to view my autism as a different ability rather

than a disability. Look past what you may see as limitations and see the gifts autism has given me.

Think through some of those societal ‘rules’ and if they don’t make sense for me, let them go.

Be my advocate, be my friend and we’ll see just how far I can go.

Edited from Ellen Notbohm and http://www.autismspectrum.net/DesktopDefault.aspx?tabid=248

Young Person & Adult

Update

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Support Group Highlights Here are some of the key points from some of the Parent Support Group sessions.

How to engage & improve

Maths with your child

Kate Mason gave an interesting session to over 25 parents attended.

We looked at how Maths is used everyday. She explained the new Numicon system that they use. These will be available to parents in packs to borrow.

Make the activity meaningful for your child:-

Spend money in shops; Measuring -. bake a cake, cook follow a simple recipe

Time – time for…, teach o’clock/ hours, look at the clock, play games.

Numbers/shapes – look when you are out & about

Repeat activities in lots of different ways and places.

Use your child’s interests e.g. Lego, farm animals, cars etc.

From Child to Adult Working Families has produced a

free guide to help parents and

carers as disabled children become

adults. From Child to Adult: A

guide to disability, transition and

family finances looks at how family

finances and their benefits may be

affected when a disabled child

becomes an adult. For a copy.

www.workingfamilies.org.uk/articl

es/parents-and-carers/caring-

for-disabled-children

Grandparents First, Winter 2012/13

Countdown – to act/finish, calm down; & practice counting up/down.

Traffic survey - over a 5-10 minutes period count buses, red cars, police cars etc. For more able kids record on paper in a simple table.

Bingo - using numbers 0 to 10

Cards- play Snap by matching numbers or shapes

Number Walk – encourage kids to look and notice numbers, shapes and symbols outside school.

Count the steps – in your house, to the corner or shop etc.

Money Sort – sort coins into 1p, 5p, 10p and 20p. Match coins. Try playing shop up to 10p or even 20p. Count in real situations – page numbers in books, toys, pencils from a pot, fruit, hopscotch, and count as you jump.

Cause & effect toys/games are also good for countdowns.

I found this session really good especially the more practical ideas

T

Creatively Managing Stigma

Run by Julie Singleton from

‘Contact a Family’. It was a small

group, but we did have a person

come from Wimbledon.

I didn’t think I’d enjoy this, but

workshop was very calming,

soothing as we got stuck into the

cutting, sticking, writing and

chatting about what we had faced

or expected from others.

We created, (me included) various

posters for the Children’s centres

to raise awareness about how

others treat/react to our

disabled children.

Next session is ‘Dealing with

Stress’ Workshop 20th March.,

Ocean Children’s Centre.

julie.singleton@cafamily.org.uk

020 8361 2358 T

Autism Carers’ Drop-In

Group If you care for, or have someone

in your family who is on the Autism spectrum aged 14 yrs or

older, why not come along; meet other carers to discuss their

important issues in a relaxed & informal setting?

Nadia Haque 0207 364 1227 autism@towerhamlets.gov.uk

11am-12pm, Thursdays 7 March (monthly),

Phoenix Blend Cafe

Make your activity

fun

Activities to try at

home/outside:

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Support Network in Tower Hamlets

Families With Autism

Relaxation Event

To be arranged in May

www.familieswithautism.org.uk

Be Different (in 18 photos) by young man

Fixing Autism (YouTube link) by US Dad

Phoenix Parents’ Support Group

Open to all affected parents in Tower Hamlets. Crèche available, please book in advance.

Summer Dates 2013 Wed 10.30 – 12.00 24

th Apr Dealing with challenging behaviours

(Basic strategies used at Phoenix) 15

th May Sensory Issues

12th

Jun PARENT CONFERENCE 10.00 - 2.30 20

th Jun Social Stories

8th

July Toilet training 10

th July Parent-led: celebrating successes &

meeting new parents

Useful Contacts Phoenix Outreach Team: Phoenix School, Bow E3; 0208 980 4740

The Carers Centre: 21 Brayford Square, off Commercial Rd E1. Supports families with adults on Autistic spectrum and other disabilities. Also have Carers Support services etc. 0207 790 1765 www.carerscentretowerhamlets.org.uk

Contact a Family: for families with disabled children. Have many useful leaflets. Interpreting service Free Helpline: 0808 808 3555, Mon – Fri 10 – 4pm,

Mon 5.30 – 7.30pm www.cafamily.org.uk

Disabled Parent’s Network www.disabledparentsnetwork.org

Parents Advice Centre (PAC): 30 Greatorex Street, E1, Whitechapel. 0207 364 6489. Have Mixed SEN parents

Drop-in Thurs 10-12. Educational Psychologist advice 1st Tuesday of the month. Welfare/Benefits advice & some help with Disability Living Allowance forms.

Tower Project: 45-55 Whitehorse Road, E1. 0207 790 9085. Has a range of services - day services for

18+, job opportunities, after-school clubs, holiday schemes and advocacy + advice services. New Saturday Activity Service plus 8’s autistic children & teens “Aut and About”

Community Support/Outreach Manager Naima Boukhriss 0208 980 3500

The Map Squad: social group run by adults with learning disabilities. Montefiore Centre, Hanbury St E1 . Also run the

Bubble Club – a East London nightclub for adults. tickets on 0207 247 3030

Mile End Leisure Centre: Free sessions on Weds 6-8pm for kids/young adults with Learning difficulties. Siblings welcome

to the sports hall activities. Contact: Marianne Sharpe, 0798 481 5760

Spouses/Partners Support Group: Contact info@whydoesmypartner.co.uk

National Autistic Society. Autism Helpline 0845 070 4004

10 -4pm. Access to Language Line interpreters.

Tower Hamlets Autism Support. Montefiore Centre, Hanbury St, close to the Brady Arts Centre E1. Runs Asperger’s Parents group. Family Support Worker 0207 377 8407 email: thamsupport@nas.org.uk

APASENTH Asian Parents Special Educational Needs in

Tower Hamlets. Carmine Wharf, 30 Copenhagen Place, E14 Near Lidl. 0207 001 2266 x 117

London Buddhist Centre – Breathing Space – relaxation & stress reduction drop-in for carers. 11.30-12.45 Tuesdays’. They also run weekend retreats for carers. 51 Roman Road, Bethnal Green E2, Junction Globe Rd.

MindBuilders – Floortime parent training. Contact: Sibylle Janert Tel: 077726 726729

REAL gives training opportunities; independent advocacy for people with disabilities, support with children, & on Direct payments etc. 0208 980 2200

Mind in Tower Hamlets & Newham for emotional

support, 13 Whitehorn St, Bow E3 0207 510 1081

Social Action For Health 0207 4265 370

www.safh.org.uk

Samaritans 08457 909 090

Asperger's Parents Group 1st Tues each month 1-3pm

Montefiore Centre, Hanbury St, close to the Brady Arts Centre E1

Friends of Phoenix (Phoenix parents only) Weds 10.30 -12pm

Summer 2013 Dates

30th May, 20th June, 4th July

Autism Friendly Cinema Screenings

RICH MIX CINEMA every 3rd Sunday at 1.00pm tickets £1.50

Film details check www.richmix .org.uk Box Office0207 613 7498

LOCAL PICTUREHOUSE CINEMAS

www.picturehouses.co.uk/autism_friendly

Stratford East Picturehouse, Salway Rd, E15 1BX 0871 902 5740

Hackney Picturehouse 270 Mare St, E8 1HE 0871 902 5734

Sun 24 March A TURTLE'S TALE 2: Sammy's Great Escape

Sun 21st April WRECK IT RALPH 2D

AMBITIOUS ABOUT AUTISM’S FILM CLUB 4 Online Film Screenings through April 2013.

register to view at www.ambitiousaboutautism.org.uk

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Autism Awareness Week in Tower Hamlets

Tuesday 26th March - Tuesday 2ndApril Autism Awareness Open Day

Phoenix School 26th March Local libraries & Idea Stores have a wide variety of practical &

factual Autism books, as well as fiction

World Autism Awareness Day 2nd

April Better awareness and understanding is a key part to autism;

being accepted in our community.

Autism-friendly

Hairdresser Nicholas Hair

Design

166 Roman Road,

Globe Town

E2 02RY

0208 980 1331 opp. Pet shop

*Parent rated*

V & A Museum of Childhood Saturday 30th March Cambridge Heath Road

London E2 9PA 0208 983 5205

Places are free, but limited – please book Everyday Sensory Play Activities

with MindBuilders 12.00, 13.30 and 14.30

Lis’n Tell Inclusive Story telling 13.00, 14.00 and 15.00

Things Mama Used to Say

Learn to survive during

hard times -

Endurance

fwautism@btinternet.com

Families with Autism News

c/o Phoenix School

49 Bow Road E3

www.familieswithautism.org.uk

Next issue – Summer