Annual Report Annual Report (Period April 1st 2013 – March 31st 2014) (Period April 1st, 2016 – March 31st, 2017) Ground Floor, Children’s Memorial Institute Ground Floor, Children’s Memorial Institute 13 Joubert St Ext, Cnr Empire Road. . 2001 13 Joubert St Ext, Cnr Empire Road, Braamfontein, 2001 Tel:Tel: 011 011 484 484 9909 9909 Fax: Fax: 011 011 484 484 3171 3171 [email protected]@autismsouthafrica.org www.autismsouthafrica.orgwww.autismsouthafrica.org PPO.O BoxBox 84209.84209, GreensideGreenside., 2034 2034

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Chairperson’s Report 2017

It is my pleasure and privilege to reflect on another very good year in the life of Autism SA.

At a special general meeting convened on 4 June 2016, members of A;SA unanimously approved and adopted an entirely new constitution for the organisation. Besides recording a fresh vision and mission for A;SA, the constitution regulates more clearly the affairs of A;SA and its NEC. Readers may access the constitution at http://aut2know.co.za.

In accordance with the constitution, each NEC serves a two-year term. At the end of its term, in October 2016, the outgoing NEC conferred honorary membership of A;SA on two of its longest-serving members, Petra Dillmann and Christine Koudstaal. At a function hosted in their honour, I noted that:

“… we assemble tonight to acknowledge the extraordinary contributions to our organisation of Petra and Christine by conferring on them honorary membership of A;SA. This is a mark of our appreciation for the vital roles they have played in establishing and developing A;SA as a non-profit organisation with national reach and influence.

Petra and Christine join a small group of remarkable individuals on whom this honour has been bestowed in the past: Bill Holland, Derek Uys, Marinus van Rooyen, Michael McGregor, Jill and Bob Stacey, Maggi Golding and Paul Pratt.”

A new NEC was elected by members of A;SA at the annual general meeting held on the following morning, at which Dr David Griessel presented to attendees a summary of his experiences at the Autism Europe International Conference of 2016.

Of the 14 candidates, six men and women were elected to serve with Sandy Usswald, who is an NEC member by virtue of her position as national director of A;SA. A further five members were co-opted onto the NEC to contribute particular skills and to enhance the representivity of A;SA’s leadership.

With these developments, the incoming NEC comprised an adult with autism, two parents of autistic teens, a remedial educator, an assistive communication

practitioner, a speech therapist, four medical professionals, two chartered accountants and a lawyer.

At its first meeting Desirae Pillay and Melt Olckers were unanimously voted in as the NEC’s deputy-chairperson and honorary secretary.

For personal reasons, two NEC members subsequently resigned and were replaced by Hector Kingwill, a stalwart in the organisation, who rejoined the NEC as its honorary treasurer.

Vitally, the NEC is now meaningfully representative of our country’s racial, gender and provincial demographics and thus well-placed to deliver on its mandate.

An early decision of the NEC was to establish a subcommittee dedicated to improving A;SA’s relevance to and interaction with adults who have autism, many of whom are forceful self-advocates and vocal critics of organisations such as A;SA. The subcommittee, chaired by Desirae and guided by Melt, is intended to listen to and learn from this vital constituency within the broader autism community.

Allied to this development is A;SA’s deepening involvement in the wider disability community, as evidenced by Sandy’s election to the executive committee of the South African Disability Alliance and the NEC’s engagement in public debates. On 6 February 2017, for example, the NEC issued a press release on the Esidimeni tragedy that continues to haunt our country. The statement read, in part, as follows:

“Autism notes with deep sadness the findings of the Health Ombud, Professor Malegapuru Makgoba, in his report on the tragic release of mentally ill patients from the Life Esidimeni Health Care Centre.

The report finds that, when the Department of Health terminated its contract with Esidimeni, almost 1,400 extremely vulnerable patients were haphazardly and ill-advisedly transferred to public hospitals and non-governmental organisation facilities. The NGO facilities were unlicensed, unprepared, under- resourced and over-crowded. In consequence, some 94 patients lost their lives by the end of 2016.

…

As the report makes clear, the State failed to protect let alone promote the rights and interests of the released patients of Esidimeni.

A;SA calls on the State to act speedily and decisively on the findings made in the report, including by implementing all its disciplinary and other recommendations. Those who caused or allowed the tragedy to unfold should be held accountable for their actions or omissions.

And those released patients of Esidimeni who remain in inappropriate, unacceptable circumstances should immediately be accorded the care and respect that the Constitution demands and they deserve.”

A;SA awaits the outcome of the ongoing arbitration proceedings before retired Justice Moseneke.

On 11 March 2017 the NEC engaged in a strategic planning process facilitated by Chantell Ilbury, co-author of books such as The Mind of a Fox. During the course of the day NEC members discussed and debated the context within which A;SA operates, the scope and nature of its existing services, stakeholders within the broader autism community, the key certainties and uncertainties of the months and years to come, A;SA’s strengths, weaknesses, opportunities and threats, the strategic decisions that will direct and shape the future of the organisation and its strategic goals for the three-year period 2017 to 2019. These goals were ultimately identified and defined as being:

1. to ensure the sustainability of all aspects of A;SA, including its:

1.1. financial integrity and security; and

1.2. organisational stability, including by means of effective succession planning;

2. to be the leader in and preferred partner for whole-lifespan autism awareness, education and advocacy (including self-advocacy and empowerment) in South Africa, including by:

2.1. pursuing the progressive realisation of A;SA’s vision and mission; and

2.2. monitoring, evaluating and enhancing its existing training and other services;

3. to grow as an organisation throughout South Africa, by:

3.1. establishing and developing an A;SA presence in Limpopo and the Western Cape; and

3.2. strengthening its existing presences in other provinces; and

4. to be a model for other African organisations that share A;SA’s vision and mission.

With these goals in mind, the day was followed by a session chaired by Ari Seirlis of the QuadPara Association of South Africa, who shared with the NEC lessons learned and strides made by QASA in its own journey along a similar strategic path. Ari stressed the financial autonomy and integrity of an organisation such as A;SA, an emphasis that resonated with A;SA which, under the leadership of Sandy, has prioritised the attainment of financial independence.

This objective requires ongoing diligence and vigilance but it seems fair to observe that A;SA finds itself today in more stable financial circumstances than perhaps at any other time in its three decades of existence. This assessment is reflected in the audited financial statements presented at pages * and * of this annual report.

I am indebted to Desirae and our fellow NEC members for their commitments of personal and professional time to the affairs of A;SA.

We extend our thanks to Sandy and her team, including all A;SA regional development officers, for the considerable energy and enthusiasm with which they continue to tackle the numerous activities and opportunities of A;SA, many of which are detailed and depicted in this annual report.

ROBIN PEARSE 20 October 2017

National Executive Committee 2016 – 2018

Chairperson: Vice-Chairperson: Robin Pearse Desirae Pillay Practising Tech Advisor for advocate and Inclusive Solutions and father of son with mother to Autistic ASD Adult daughter

Secretary: Melt Tumi Leeuw Olckers Paediatrician with Autistic Self- Special interest in

Advocate Autism

Treasurer: Hector Petrus De Vries Kingwill Professor of Child and Bookkeeper – Adolescent Psychiatry friend of Autism at the University of

South Africa Cape Town

David Griessel Neliswa Khumalo Principal Specialist Academic Support – Dept. of Specialist

Paediatrics and Child Health at the University of the Free State.

Shani Zuk Mmatlala Mabeba Program Director: Child Psychiatrist Ernie Els for Autism

Centre

2016 was an exciting year for Autism South Africa! At the end of 2015 I decided on a goal to ensure that our organisation starts collaborating effectively with others and this was the year that this was truly realised! Jozi4Autism was conceptualised by a collaboration between Caring Women’s Forum, F.E.E.D. and Autism South Africa and our inaugural 2016 Autism Zoo Trot was realised and what a special day it was!

Our Autism Awareness Campaign for 2016 has grown immensely and we saw awareness events taking place throughout April in all corners of the country! Our theme for the campaign was #CelebrateMyUnique and was so well supported! Thank you to all that lit it up blue for Autism Awareness and community solidarity, I salute you!

2016 was a year for firsts! It also saw the start of a collaboration between A;SA and the Institute for Psychology and Wellbeing, University of the North West with our national conference being hosted in Potchefstroom for the first time! It was a resounding success and I am so looking forward to our future collaborations!

Autism South Africa continues its path to sustainability and showed growth during the financial year. We continue to rely on donations and support from the public but we are slowly increasing our independent income stream which is vital in today’s economic climate.

APRIL 2016 - MAR 2017 INCOME STREAMS Implementation Membership Activities e.g. Fees fees Merchandise Golf Day/LIUB 3% 1% Sales 6% 0% Casual Day 6% Donations - Restricted 41%

Training 32%

Donations - Unrestricted 11%

7000000 Income Statement Comparison 6000000 5000000 4000000 3000000 2000000 1000000 0 2016-2017 2015-2016 2014-2015 2013-2014 2012-2013 -1000000 -2000000

Income Expenses Surplus Reserves

The Gauteng Department of Education, committed to access to the curriculum for learners with autism rolled out a massive training campaign for educators working in new schools and units. Autism South Africa was one of the service providers in this rollout and we were grateful for the collaboration and opportunity. Now… the challenge to the rest of the provinces… What are you doing for our children?

Our 2016 team-building saw us all gather during wintery June for upskilling and pampering like never before… Our team functions virtually and it was so good to have everyone together for a week of learning and laughter! Here we all are just before our spa day at Indaba Hotel, for some much-needed massages and TLC.

September 2016 saw me jet-setting again to the United States for a once in a lifetime opportunity! The bi-annual Global Leadership Network was hosted by Autism Speaks in Washington DC which brings together leaders from all over the world to share experiences, successes and challenges. It was truly a special occasion and I am honoured to have been a part of the meeting! (I even got to sit next to and chat to Dr Stephen Shore… You know the quote ‘If you’ve met one person with autism, you’ve met one person with Autism… That’s him!)

Whilst I was in the Northern Hemisphere, the NEC kindly facilitated my attendance at the Love and Autism 2016 conference which was incredible. It really brought home to me the power of Autistic self-advocates having a voice and a say in what affects them! We really need to listen and take note as parents and professionals. I managed to chat to many of the well know names in the world including Alex Plank and Steve Silberman!

Autism South Africa is part of the South African Disability Alliance which had their AGM during 2016 during which I was elected to be a part of the executive committee. This is quite a challenge and I hope I can do you all proud within the sector!

The Annual General Meeting in October 2016 saw a new National Executive Committee (NEC) elected which is more diverse than ever before. Members are committed to seeing a real transformation of A;SA right from the top and I am very proud to be able to work alongside you. I would like to take this opportunity to thank the NEC for all their support and encouragement to me as director, I really appreciate each of you.

Of course, I cannot end without a mention of the AMAZING Autism South Africa team. You truly are the best! A;SA has grown both in sustainability but also in footprint across South Africa and we wouldn’t have been able to do it without you and your passionate commitment to autism in South Africa. We are a team committed to serve our beneficiaries and work towards realising the rights of those with Autism in South Africa.

We are because you are! All the Best,

Head Office Staff

National Director Sandra Tel: 011 484 9909 and ex officio NEC Usswald [email protected] member

Resource Claudia Tel: 011 484 9909 Development Ceresa [email protected] Officer

National Education Vicky Lamb 011 484 9909 Facilitator [email protected]

Office Administrator Elizabeth [email protected]

Mosehla 011 484 9909

Internal Lerato 011 484 9909 Bookkeeper Thlako [email protected]

Regional Development and Support Officers

Eastern Cape Antoinette Tel: 071 360 3992 Bruce-Alexander [email protected]

North West Thando Tel: 079 392 2786 Makapela [email protected]

KwaZulu-Natal Rosemary Shezi Tel: 071 360 4034

[email protected]

Northern Cape Elfreda Baartman Tel: 071 473 4293

[email protected]

Limpopo and Mary Moeketsi Tel: 071 360 6535 Mpumalanga [email protected]

Free State Selinah Jele Tel: 078 152 2608

[email protected]

Gauteng Gloria Gkikas 0114849909 (part time) [email protected]

Draw on and contribute to national and Promote and Identify and international Lead autism protect the address the Partner with and Celebrate and experience and awareness, rights and differing needs be relevant to Champion the expertise in the inclusion, advance the of infants, people with diversity and field of autism, support and interests of all children, autism and their creativity of while retaining a advocacy those within the adolescents families and people with local and throughout autism and adults with communities autism regional focus South Africs community autism on its challenges and opportunities

All people with autism will enjoy all rights and opportunities to meet their needs and fulfill their potentials, throughout their lives, as equal members of their families and communities

Training

Awareness and Advocacy Empowerment

Activities and Support

Northern Activities by Province Cape 11% Eastern North West Cape Mpumalang 4% 22% a 5% Limpopo 6% Free State 10% KwaZulu- Natal Head Office Gauteng 17% 5% 20%

Accreditation Health Professions Council of South Africa South African Council of Social Services South African Council for Educators Registered with National Treasury as a service provider

Workshops Hosted 50 45 40 35 30 25 20 15 10 5 0

Workshops Hosted

Gauteng

1371 Individuals Attended our Workshops

379 Parents 769 Educators 1 Doctor 65 Social Workers 151 ECD Practitioners 47 Therapists 192 Others St Stithians College Carmel Academy Thabo Vuyo LSEN Tsoelopele Full Service Economic Development S.G. Lourens Nursing School Department College Clinic School Itumeleng ECD Centre Thulasizwe School Jhb School for Autism Doug Whitehead School Rant en Dal School Boiteko LSEN Moetapele School Con Amore School Nka-Thuto School Little Dynamite Pre-School Itumeleng preschool Dwarf City ECD Seventh Day Adventist Church Madiba Comprehensive Mother Goose ECD Nasrec G4E Exhibition Land of Oz preschool Naptosa Mfihlakalo LSEN Katha Centre Wits Reproductive Health Wits Education Office The Gateway School Casa Do Sol School Soshanguve Care Home Melkbos, Centurion UNICA School St Vincents School for the Deaf

Hands On Autism 1: TEACCH Workshops: July 2016; October February 2016; April 2016 2016 (two); May 2016; June 2016; Hands On Autism 2: October 2016 Sept 2016; Feb 2017

Northern Cape

839 Individuals attended our workshops

85 Parents 292 Educators 1 Doctor 17 Social Workers 77 ECD practitioners 59 Therapists 417 Others Colesburg Library Kimberley Hospital Complex DeafSA Port Nolloth DSD Homelite Community Hall Learamele Special School Tlhalefang Day Care Emmanuel High School Galeshewe Library Retlameleng Special School Huis Harmony Tehuis Bergsig Home for the Aged Springbok Hospital Tlhakalatlou Community Danielskuil Clinic Hall Pinkster Kerk Tshwarelela Primary School Vuyolwethu High School Wonder Kids ECD Centre SAPS Hopetown Peme School Ma Doyle Clinic UGW Clinic Kutlwanong Hall De Aar DSD Redirile Creche Prieska Hospice Ethembeni Clinic Prieska Clinic GWK Hall Magwagwe Kuruman Strydenburg Combined Strydenburg Community School Centre SAPS Douglas Regional Magistrate Court Kimberley

Hands On Autism 1: August 2016

North West Province

420 Individuals attended our workshops

78 Parents 196 Educators 9 Doctors 38 Social Workers 59 ECD practitioners 10 Therapists 33 Others

Lillian Lehetla Special Curro School – Mahikeng International School – School Mahikeng Tinkie Toenkie ECD Centre Reatlegile Special School Maggies Millenium School Lonely Park Disability Centre Itsoseng Dept of Education Lichtenburg Moses Lotane Hospital MM Sebitloane School Odds and Ends Living Water Ministry School North West Mental Health Thlabane Community Health Centre

Eastern Cape

597 Individuals attended our workshops

85 Parents 292 Educators 0 Doctors 0 Social Workers 7 ECD Practitioners 14 Therapists 195 Others

Namaqua Clinic Autism Sinethemba Quest School Hudson Park Primary Small Talk Educare Phumelela Special Care Coega Vulindlela Centre Coega Village JAK Fabricks Cambridge Prep School College Street Primary Vukuhambe Special School Port Alfred Hospital Khayalethu Special School Bellafides Cottage School St Johns Primary School Beacons Christian School Amatola Row Kopanong Centre Siyabathanda ECD Zwelitsha DSD King Williams Town DSD Love Life Centre

Hands On Autism 1: April 2016; July 2016; February 2017

Hands On Autism 2: October 2016; February 2017 (two); March 2017

Kwa-Zulu Natal

385 Individuals attended our workshops

104 Parents 41 Educators 5 Doctors 8 Social Workers 147 ECD practitioners 4 Therapists 76 Others Nkazi Stimulation Centre Umlazi Place of Safety Excelsior Child and Youth Care Centre Khulakahle David Beare Stanger Training Centre Luthuli Hall Centre Reunion Special School Prince Mshiyeni Hospital Saw Pits Day Care Pinetown Council Chambers

Free State

378 Individuals Attended our workshops

37 Parents 23 Educators 0 Doctors 0 Social Workers 288 ECD Practitioners 5 Therapists 25 Others Masilo ECD Kgostong Library Phola ECD Centre Hoopstad Edenville Koffiefontein Bophelong Disability Centre ML Maile Development Monyakeng Library Centre Matwabeng Centre Lesedi Lakhanya Boikemisetso Kroonstad public library Tihabologo ECD Centre Meloding ECD Nazarene Hope Centre Sasolburg Ragogang ECD DA Maleho Clinic Vredefort Ficksburg Hospital Assemblies of God Mangaung Library Khauhelo Centre Martie Du Plessis School

Mpumalanga

647 Individuals attended our workshops

102 Parents 69 Educators 30 Doctors 26 Social Workers 105 ECD Practitioners 40 Therapists 295 Ohters Piet Koornhof Building Open Nkangala District Ermelo DSD Centre Space Municipality Govt Complex Building Dept of Education, Piet Belfast Community Centre Nelspruit Koornhof Civic Centre Magudulela Stadium Sibathandabenje ECD

Limpopo

223 Individuals attended our workshops

0 Parents 48 Educators 0 Doctors 3 Social Workers 140 ECD Practitioners 0 Therapists 32 Others Botlokwa LSEN School Lerupurung Full Service Mphanama Full Service School School APD, Limpopo Maselebalo Creche NTK Building Modimolle Biko ECD Centre Tsheza Comprehensive Timvhumbeni Education School Centre

Who are the Others?

Volunteers South African Police Service

Teaching Assistants Taxi Drivers

Nurses Church Members

Department of Education District Officials

General Public Learners at schools Psychologists

Family members Department of Agriculture Caregivers

Autistic Adults House Mothers

Media

Radio Teemaneng Stereo – Northern Cape North West FM – North West

Lowvelder Article – Eastern Cape Ubuntu Radio

SABC Channel Africa – National Lesedi FM

Wild Coast FM – Eastern Cape Umhlobo Wenene

Pretoria FM – Gauteng SAFM

Algoa FM – Eastern Cape 702 Radio

Rosestad FM – Free State Lethlabile FM

Radio Al Ansaar – Kwa-Zulu Natal Classic FM – National

Lentswe Community Radio – Free State Kurara FM – Northern Cape

Motsweding FM – National SABC Channel 404 – National eTV – Sunrise Show Radio Islam

OFM – Free State

National

South African Disability Alliance (SADA) ECD Stakeholder Forum

Department of Justice Advisory Committee ICT Working Group

Department of Public Works Advisory Committee Amavulindlela SEFA Disability

Inclusive Education Stakeholder Group Institutionalisation of payments

CBE EXCO/Presidents Forum Disability Data Collection

Transformation of protective workshops stakeholder – SAFMH National Children’s Rights Committee National Disability Rights Machinery Gauteng

Campbell House Apricot Tree Centre ADOS interest group Skills Centre City of Jhb Disability Roadshow Westbury Transformation Development Centre Youth Centre Northern Cape NGO Stakeholders Forum Premier’s Office Advisory

Boitumelo Special School Francis Baard District Health North West Province

Department of Education – Provincial office Rustenburg Skool van Buitenwagen Field’s College North-West University – Potchefstoom Campus Eastern Cape

Department of Education stakeholder group SASSA Care Dependency Grant EC Disability Economic Empowerment Trust Forum Buffalo City ECD Forum EC NGO Coalition Forum Amatola Welfare Development Forum Free State

Dr K Maile Clinic Mophate Secondary School Genezaretha ECD

Bophelo Clinic Free State Disability Summit Dept of Education Group

Limpopo

Maretlagadi Disability Centre Reakgona Disability Centre Premier’s Disability Forum Modimolle Hospital Lebone LSEN Tshilidzini Disability Centre Disability Chamber Forum Mpumalanga

Provincial disability stakeholder forum White River Community Hall Temba Hospital Delmas Mental Health Kwa-Guqha Clinic Kwa Zulu Natal

Rotary Club – Pinetown Children’s Machinery – Pinetown Council

Ethekwini Disability Forum State of The Province Address Greys Hospital

Disability Parliament Committee Department of Arts and Culture Disability Indaba

Gauteng – Gloria Gkikas

The primary aim of this project remains the support of people with Autism within their family unit and community by supporting and stabilising the family so that the family is better able to take care of the child/ person with Autism. The focus is to provide holistic support and psychological counselling for parents and carers of persons with Autism especially on diagnosis with a focus on the early intervention principles.

This past year has been a fruitful one with good outcomes:

Parent Counselling and Support: The first contact with parents whose children have been newly diagnosed happens at the Neuro-developmental clinics, immediately after diagnosis. This is a crucial step in intervention as it provides the parent/s with immediate emotional support and the first basic information on Autism and it also directs them to available resources. On average 10 new referrals of children diagnosed with ASD are received from our local Neuro-development Clinics in a month.

Counselling: Counselling is offered to all parents as and when the need arises and is on an ongoing basis. This makes up 90 % of the work load. Between 5-7 parents are seen per day at our offices in the CMI Building on Mondays and Wednesdays and each parent will attend an average of 2-5 sessions before stabilisation is achieved. The continuous increase in the need for telephonic counselling, clearly indicates the continuous support needs of families even those whom we refer to as stable, has resulted in a backlog. At least two days per month has been set aside to manage this.

Referrals: Our referral base remain the Neuro-developmental clinics, other professionals and by word of mouth. The Neuro-developmental clinics have specific days for the Assessment of children with Autism and the five hospitals that we support are the CM Academic Hospital, Rahima Moosa Coronation Hospital, CH Baragwaneth Hospital, South Rand Hospital and recently Dr. Thompson consults at Edenvale Hospitals and we also now receive referrals from there.

Stats: Our stats show that in the period from July 2016 to March 2017 there have been over 500 scheduled appointments at our offices of which a large number of these were parents of newly diagnosed children, 70% of these were referrals from the Neuro- developmental clinics and the rest were by word of mouth and from other professionals. Also in the past year there were approximately 300 telephone counselling sessions and internet queries relating to diagnosis, schooling, behaviour and family support.

School Placements: The process of admissions introduced by the Department of Education in April last year has been positive in that the GED will allocate a school to a parent and we now do not need to be phoning around looking for possible placement. The concern, as was expressed in the previous report, remains the manner in which parents are treated at the GED and the very long waiting period before a school is eventually allocated. The waiting for placement is a very stressful time for parents and some parents have been waiting for more than a year.

Parent Support Groups: We had initially established over twenty Parent Support Groups in the JHB and PTA areas but have now converted these Groups to WhatsApp Support Groups on social media. Our meet groups happen within the STARS (Siblings Group) framework and are convened quarterly. In the past year we had four STARS- PSG meetings and convened 4 PSG Facilitators meetings with training and support as the focus topics.

Parent Support Groups: Johannesburg and Pretoria.

List of Parent Support Group Facilitators:

Area Contact Details East Rand: Vosloorus, Kathlehong, Spruitview, Palm Phumelele Nancy Dlamini Ridge, Germiston, Primrose, Boksburg, Springs, Twa 072 525 6029 Twa, Daveyton, Linksfield, Alexandra, etc. All areas [email protected] East of Johannesburg. North- Johannesburg North: , Killarney, Nicole Sartini Parkview, Parkhurst, Houghton, , Craighall, 076 080 9208 Linden, Cresta, Northcliffe, Radiokop, Weltevreeden 011 482 4310 Park, Randburg, etc. [email protected] All areas north of Johannesburg. Johannesburg Central and CBD: , Bertams, Richard Mpunga Kensington, Malvern, Tulisa Park, , 082 421 5898 Braamfontein, Mayfair, Fordsburg, Brixton and [email protected] Johannesburg CBD. All areas Johannesburg Central and surrounds. West Rand: Coronationville, Weston, Newclare, Marietjie Janse van Vuuren Melville, , Maraisburg, Constantia, 083 954 9173 , Krugersdorp, Westonaria, Charltonville, [email protected] etc. All West Rand Areas South Western Areas: , Eldorado Park, Mulalo Vanessa Mavhungu , Lenasia South Ennerdale, Orange Farm, 011 537 9549 All South Western Areas. 072 062 1925 [email protected] Southern Areas: Booysens, , Linmeyer, Rochelle Swart Risana, Alberton, Meredale, Eikenhof, Walkerville, 011 782 0959 Weilers Farm Meyerton, Vereeniging, Sebokeng, 083 256 2621 Vanderbijlpark, etc. [email protected] Pretoria- Centurion Johanni Meiring

All Areas. 083 395 9387 [email protected] Group name: Parent Reality : Palesa Tshabalala Midrand, Diepsloot, Thembisa and surrounds. 071 710 0903 011 050 5293 [email protected] : All areas

Research Participation: We completed the Autism Navigator Training Study in July last year.

Collaboration with the Legal System: Early last year the Magistrate at the JHB Children’s Court asked us to assist with two cases which involved a young child and a teenager, both diagnosed with Autism and non-verbal. It was a learning experience for us and both cases had good endings. This year we again assisted with another case where the child was placed in a place of care.

Finally, the past year has been a good and productive year though with some challenges but we look forward to good things going forward!!! Northern Cape – Ruth Blood/Elfreda Baartman

Parent Support: 18 families assisted face-to-face North West Province – Thando Makapela

13 Families supported and counselled Eastern Cape – Antoinette Bruce-Alexander

Parent Support: 175 families assisted face-to-face and/or telephonically Support Group Meetings were suspended in East London at the end of 2014 due to lack of attendance and disagreement on a date and time. But, we have started a Social Media Support system that works very well and can reach more families because a specific time, date and location is not required. Our Whatsapp group is growing and parents actively participate in discussions frequently. I am also being asked constantly to add another parent by other parents on the group. This is a time- consuming group but it works and is accessible to all at any time. That is what support is all about to me. If you need information or someone to talk to, you don’t want to wait until a specific day or time to be able to get an answer or the emotional support you need now. The next step is starting a Support Group in isiXhosa in 2016. This has not materialized. It is something to consider in the future, but I will have to find a suitable “Admin” for this group because I don’t speak isiXhosa well enough to understand all communication.

WhatsApp Group – 0726782452 WhatsApp Group - 0824655805 Free State – Selinah Jele

Parent Support: 76 families assisted face-to-face and/or telephonically

WhatsApp: 0760981025.

Limpopo - Mary Moeketsi

Parent Support: 65 families assisted face-to-face and/or telephonically

Support Groups: Mankweng Parent Support Group Autism Limpopo Mpumalanga – Mary Moeketsi

Parent Support: 13 families assisted face-to-face and/or telephonically Mkhonto Parent Support Group Mbombela Parent Support Group Ermelo Parent Support Group Siyabuswa Parent Support Group

Kwa Zulu Natal – Rosemary Shezi

Support to Families: 23 families supported

Support Groups 1. Vryheid Support Group 2. Moms with Passion 3. Autism Moms

WhatsApp Support Group: 0789514560

Staff Narrative Reports

Head Office: National Education Specialist: Vicky Lamb

Autism has been perceived negatively in the past, and many families go through a process that has been likened to the grieving process. While there are definitely aspects of autism that are negative, there are definitely strengths in autism. This has been my focus over the last 18 months – to try and change the perceptions of people regarding autism.

I have tried to convey this through social media, particularly Facebook. According to Blue Magnet (a digital marketing company), the Facebook platform within South Africa has grown from 6.1 million in 2012 to 14 million in 2016 – this gives us potential access to 14 million people in South Africa, which translates to 29% of the population (https://www.bluemagnet.co.za/state-social-media-south-africa-2018/). While our likes and reach have not yet reached the 10 000 mark, I am hoping that through constant posts and engagements we will soon get there. In March 2016 our Facebook page had 6148 likes, currently we have 8475 likes – I would like to see our page reach 10 000 by the end of the year. I have also created an Instagram account for Autism South Africa – this is a relatively new social media platform, and has not yet gained too much traction, however we have at least one new follower a week.

At the end of last year I completed the Family and Relationship Counselling course through INTEC. This course provided me with great insight into working with families and looking at the dynamics and structure of families. I have been able to apply this knowledge when conducting home support visits.

During 2016, I had the opportunity of shadowing Maggie Golding while she conducted the TEACCH training in Gauteng for the Department of Education – it was truly an experience to hear her story and learn from her.

2017 has been a year of learning for me. This started off with attending the Tony Attwood workshops in February – these talks were not only inspirational but gave so much insight – I have found much of his work to translate into helping families and teachers, as well as teenagers on the spectrum who are struggling at school and personally. We were also invited to discuss the National Strategy for Autism with the Department of Basic Education – this is the first step towards creating an educational environment that will enable our learners to achieve their potential and create a community where autism is not only known about, but also accepted.

Free State – Selinah Jele

Free State - Annual report 2016 -2017

In February 2016 Autism South Africa great ideal operation conducted with the province when I managed to receive the following department’s key components as follows:

Department of Education based in Bloemfontein, of Mental Health southern Free State, Free State Association for persons with disabilities, Down Syndrome Free State and with Epilepsy South Africa.

March 2016 Sipho Mqwathi director at inclusive education Sasolburg arrange that Autism South Africa host workshop for the all department in Fezile Dabi district.

March 2016 – 27 March 2017 Hosted workshops in Botshabelo, Mangaung, Bethlehem, Finksburg hospital, SASSS Free State Medical Symposium, Vredefort, Sasolburg, Virginia, Bultfontein, Soutpan, Theunissen, Nazarene Hope Potty training Centre, Kroonstad, Bronville, Henneman, Matwabeng Centre, Bothaville, Wesselsbron, Dr. M.L Maile Development centre, Bophelong disability Centre Fauresmith, Koffiefontein, Edenville, Kgotsong, Hoopstad, Bultfontein.

March 2016 – Radio interview at Lentswe community radio station in Parys interviewer Maki.

“WAAD April 2016 was well supported by the community (3km autism fun-walk) and government’s structures like the Mangaung municipal city manager Mr Porotloane and OFM autism awareness interview.

April 2016 Mr Raymond Matsemela arranges golf torment at Schoemanpark Bloemfontein to raise fund-raising for the autism classroom at Pholoho special needs school.

June 2016 the SASSA Free State Medical Doctors’ Symposium to present at Clarens. August 2016 Autism South Africa donated first aid kit was distributed to the following: Nazarene Hope potty training centre in Bloemfontein, Mangaung, Incredible Abilities Stimulation Centre, Parys and Hlonolofatso Stimulation Centre, Mangaug.

February 2017 Department of Education appointed task team. The Team consists of the following members: Me Qwelane, Me Mokone, Me Jele and Me. Pumla Ngesi-George.

30 March 2017- Telephonic radio interview on Naledi community radio station interviewer Julia Nkhobo.

Eastern Cape – Antoinette Bruce-Alexander

Autism South Africa Teambuilding in JHB Thank you team! Thank you Sandy and team! I love all the positive feedback and creative thinking of this team. And I had a great time meeting Lungi and her Paper Craft Project, and had fun making a craft project with Vicky!

Casual Day – September 2016 Another Certificate Received for stickers sold, thank you very much, it is so much fun to run around with the stickers twisting people’s arms to buy stickers for a worthy cause!!

Classroom and School Support – Department of Education OR Thambo Autism Center – Mthatha - Nomaza Kwakhanya Centre, NU9, Mdantsane – Ziyanda might close down due to lack of support and shortage of children at the centre  Tsolo Special School - Tozama College Street Primary School – Janey Stevens, Len Cloete, he is leaving at the end of 2016 and they will get a new Principal. Parklands Special School – Eugene Marais and Nicolene Botha Voorpos School – Julie Anne Myburg Cambridge Prep School - Sally Khayalethu Special School – Khaya Ntsham, Mr Mdikane Victory Kids, PE - Zeidie Autism Eastern Cape, Teresa and Bennita Steenekamp, Joan Joritsma Bellafides Cottage School – Clarissa Masola Quest School – Lottie de Vries Abundant Life Christian School, King Williams Town - Bridgette iKamva Centre, Gonubie, East London – Luzanne Toddle Inn, Nahooh, East London – Charmaine Corrigan Hudson Park Eaglets, East London AND Hudson Park Primary School – Brenda Moss Yelethu Eliphulo Center, Mthatha – Bongi Hudson Park Primary School – Dane Channon, Counselling Psychologist Gonubie Primary School – Cheryl le Roux Beaconhurst Primary School – Wendy Burmeister Mrs Njotini, Mrs Tokwe – Provincial Office, Dept of Education, Zwelitsha Local District Based Support Team, East London District – Miss Bulelwa Koyo Dept of Education HIV/AIDS and Life Skills Section, Rubusana College, Mdantsane Academic Support Dept of Education, Eastern Cape Province – 11 – 12 Sept 2015 workshop and displays – Mrs Pumla Jola

Department of Health: Grey Hospital in King Williams Town - NDC Clinic – Dr Levy Frontier Hospital, Queenstown – NDC Clinic Frere Hospital, East London - Paediatrics and NDC Clinic – Drs Boon, Harper, Michaelis, Chitnis Life Hospital Group Nurses Training College – Cecile Breitenbach Cicelia Makiwane Hospital, Mdantsane – NDC Clinic – Dr Michaelis Glen Grey Hospital, Lady Frere, Mr Titi McClear Provincial Hospital. Nicole Coetzee

Port Alfred Hospital – Terri Lee Baartman Oxford Street Clinic, Sister Christina Booi Butterworth Clinic – Sister Primrose Mangqalaza Nelson Mandela Hospital – Mthatha – Paediatrics and NDC Clinic I also keep in contact regularly with the Speech Therapists and Occupational Therapists at these hospitals – we work well together.

Dept of Social Development Local Buffalo City Municipality – Colleen Forsighth District Office, East London and Provincial Office, Bhisho/Zwelitsha. (Mrs Rana, Mrs Pango, Mrs Nonkululeko Booi, Mrs Mary Mushwana, Mrs Kutu, Mrs Rungqu Skosana, Miss Bodlani, Mrs Kula, Mrs Fihla, Mrs Mkosana, Mrs Bells – all contacted about training and workshops, but none arranged a date for training) SASSA, East London, Port Elizabeth, Mthatha - Malcomb Mental Health – Port Elizabeth

Government Meetings – Other: Meeting with The Speaker of Parliament, Miss Ganyaza, to discuss Services to Children with Autism and way forward. This meeting was as a result of parents threatening to march to the office of the Premier of Eastern Cape. (Telephonic) Nombuso Mapalala, Office of the Premier of KZN, People with Disabilities.

Universities Supported Fort Hare University, East London Buffalo City FET College

Assist with University Students studies Nomawande Peter, Student at University of Fort Hare, Alice. She is a master Student in Social Work and she is focussing on the Rural vs Urban relationships between parent and child with Autism. Nomawande is still continuing with her studies and I am still assisting her where needed.

General Autism South Africa – Eastern Cape is a registered service provider for the Department of Education and training tenders for training of educators were submitted, training was completed. We have completed a number of Hands On Autism 1 and 2 workshops for Dept of Education so far and still more are scheduled for the next year. Of all the government departments, Dept of Education has made the biggest effort to have their staff and officials trained! Well done Eastern Cape Dept of Education!! Now we wait for the other Departments to take up the challenge of learning about Autism. Nomaza Nkohla opened OR Tambo Center for Autism in Mthatha and it looks as if all is going very well there. I assist her with info, brochures and advice where I can. She is doing a great job! Organisation for Autism Awareness Big Walk started in February 2017 with route planning and school involvement. The Big Walk for Autism took place in April 2017, the Big Walk for Autism in 2016 was very well attended although I thought we were going to be flooded out, but the weather cleared up and we had a beautiful day! Advocacy, advocacy, advocacy!

A:SA, EC is a member of the Amatola Welfare Development Forum, EC Disability Economic Empowerment Trust Forum, Buffalo City ECD Forum and EC NGO Coalition Forum.

Big news: In September 2016, I started a new Autism Adult Skills Training Project called the East London Adult Autism Newspaper Craft Project. We were very fortunate to have Lungi Sokhulu from JHB to come to East London and help us start this project with full funding from Autism SA. We have a group of young adults and their parents or care givers who attend every Saturday afternoon. We received training from Lungi in four phases and after the fourth training, the regular members received a certificate from her. It is so exciting to see the growth and development of our group and the young men in this group. We – the parents – also have a lot of fun making articles and the young men enjoy being with each other in a structured environment. We meet every Saturday from 2 to 4 pm. We have a regular donor of newspaper and we have a good supply every week to work with. I mainly facilitate new skills training for the new members. The main article we make is a handbag which is sold for R180.00 per bag. But most of the young men also make coasters, pot holders, display pieces and wall hangings. The young men earn 90% of all the money received for the articles they sell, the project gets 10% to buy clasps, trimmings and glue / varnish. We have not advertised any of our goods yet because it sells itself. Where ever we go and have our handbags, people want to know where they can buy them and ………………….. SOLD! The biggest plus for me is the interaction I see between the members of the group. This group also serves as a support group for parents we so badly need. All our young men are about the same age and we have a lot of similar problems to deal with. The aim with this group is to give the young adults an income and independence. It also will provide them with work to do from home but still to be productive and busy. This group is dedicated and hard working.

Northern Cape – Elfreda Baartman

Autism awareness and training in the Northern Cape has progressed rapidly. From radio interviews to shopping centres awareness campaigns. Training at schools, clinics, hospitals and different ngos has been very successful. Parents are phoning in from all over the Northern cape inquiring about schooling for their kids and with great sadness I have to tell them that there is no autism specific school in the Northern cape yet. This is truly troublesome for me as a parent too, however, it’s not the end of the world I guess. There are many ways to kill a cat. What I normally suggest to parents is to start home schooling, but also advise them to get a tutor to do that, preferably someone with knowledge about autism. I also advise parents and tutors to do the HANDS ON AUTISM TRAINING as it is very beneficial to both parents, child and educator of coz.

I am planning a LIGHT IT UP BLUE CAMPAIGN for next year April 2018. I already have some stakeholders on board. Office of the premier, Deafsa, Fathers joy autism foundation and a celebrity actor (Mr, Neville Meintjies from 7delaan) are already on board. The Commission for gender equality showed interest, dept of social development will also be involve. We are all looking forward to this big event, as this will be a 1st of many LIGHT IT UP BLUE

CAMPAIGNS to come. We identified the CITY HALL in KIMBERLEY as this is one of the historical buildings in Kimberley. We are planning to take it outside of Kimberley in future to encourage the small surrounding areas in the Northern Cape to do the same .

We as the Northern Cape strive to get the name AUTISM out there so that more communities can be reached and educated, so that children can be identified earlier and in thus early intervention can take place and a diagnosis can be made asap.

The reality still remains, that we need a AUTISM SPECIFIC SCHOOL IN THE NORTHERN CAPE.

Kwa-Zulu Natal – Rosemary Shezi It is pleasing to see growth in ASD awareness in this province from professionals to communities. One must convey gratitude to the hard work, dedication and management from the Paediatric Neurology Teams at INkosi Albert Luthuli Hospital KZN Children’s Hospital, Greys Hospital, Eden dale Hospital, and Child and Adolescent Psychiatry Clinic at King Dinuzulu and Prince Mshiyeni Memorial Hospitals. The referral partnership with KZN Children’s Hospital is extremely helpful and the team is amazing. The Paediatric Nurses Update I presented in at INkosi Albert Luthuli Hospital was a very educative experience with the specialist paediatricians presenting on the paediatric neurology topics and on co-morbidity.

The Rehabilitation services in the Department of Health plays a very vital role as one has witnessed growth in ASD services in this filled from Hospitals to Community Health Centres and to schools. This is very helpful in rendering more therapy to our ASD affected one aspect which leads to parent despair. It is more pleasing to inform that the Department of Health Rehabilitation team has a working partnership with the provincial Department of education Special Needs Education Services.

It is amazing how the special needs schools have resurfaced in committing to educate our learners. This has seen a slight increase on the intake of our learners into these schools. Though some still miss the need for an education curriculum for our ASD affected learners, I applaud the few who have taken the initiative to do right. There is a healthy competition out there. Sincere gratitude to the Department of Education Special Needs Education Services District Officials who have a commitment to ensuring service dedication to our learners, keep it up and let others follow suite.

ECD centres training I provided in different places highlights the need for an increase in diagnostic clinics as requests for further attention post Early Signs identification get into long waiting lists for assessments. It also raises an alarm as to number increase for this service.

District Municipalities are still lagging behind in fully serving our ASD community, but some are trying though much work still needs to be done. This is where the much needed service of Ongoing family support and training could be fully accomplished. Hopefully they gradually tow the line. We need the business sector to be on board as well.

Limpopo/Mpumalanga – Mary Moeketsi

Another year of work gone, every the beginning of the year it seems like one is starting afresh but soon will realize that I am taking where I left off the past year.

It has been a very busy year, awareness raising in all the districts of the two provinces I work in. Giving support to families, in getting their children properly diagnosed or been placed in schools, even though are still faced with a challenge of schools that properly cater for our children with ASD.

I can confidently say, as an organisation we are surely making a mark when it comes to distribution of information on ASD. There is still a lot of work to do but are voices are more and more heard.

Parents are starting to also make their voice heard, in both provinces there are parents support groups that have now registered as NPO’s and are also raising awareness about the condition, they invite me to come and talk about the condition. Mkhonto parent support group in Mpumalanga, has actually gone as far as starting a centre for their children and they fund the centre

My wish is to see both provinces have facilitators in the districts, this will help to get awareness to reach people in the most rural areas of the province where there is a lot of myths and misinformation about the condition.

North West Province – Thando Makapela

Quite honestly there is a good story to tell about the North West.

Building the foundation started in 2013 when I went through to the Province to introduce myself as the RDO. It was not easy to penetrate a very traditional culture among others. I first knocked at the Provincial DSD where I got a negative welcome but after a while everything went well, trained about 40 of their personnel out at Rustenburg Kloof most of them bought the Makaton DVD’s. All was well until we planned to do a road show for the North West on a robust awareness on Autism.

I generated a document to assist us and a checklist. The problem began when we had to implement this, as there was not budget - this was about a year and half ago up to now we have not embarked on this roadshow.

I did not lose hope I started visiting special schools and hospitals. Conducted workshops at Bophelong/Mafikeng District Hospital the Speech Therapy Department we started a parent support group for parents of children On ASD was assisted by a speech therapist by the name of Mpho who is very proactive. Parents would meet once a month, as most of the parents were unemployed and some had to travel from far.

This drive went on very well until Mpho decided that she was going back home to Bloemfontein and everything collapsed, and when I went back there was told there is nobody driving that. Another set- back.

I visited schools outside Mafikeng namely, Lillian Lehetla Special School beautiful school but they still struggle to integrate our children with all the resources they have. MM Sebitloane Special School in Taung I opened an Autism specific class there in 2015. Luckily early this we visited with Vicky and she was happy with what she saw, she also conducted a workshop for them.

Reatlegile Special School in Itsoseng they are still struggling along, I still give support.

Retlametsoe Special School the staff travelled to JHS for training. I also trained about 60 medical doctors who really were so surprised that in their 7 year of medical studies they have not heard of Autism. These are doctors that sit in SASSA offices and deny our children of the grant.

From there on I trained staff at Rustenburg Department of Education this was becoming quite interesting. The problem is that when you have visited these departments there is no call back, until you call them to remind them that there is more to train on Autism.

Meerhof Special School in Brits I also trained staff beautiful school with all resources. The Department of Education invited me to train all principals in all districts under one roof this was still under Dr Mvula who was then removed when we had to do follow ups.

All in all I am still positive as I met Dr Mvula recently and he promised me that we will restart our project of integrating children into schools as they have already closed schools that were not performing. He had said that he would know his position by the end of October.

One other problem there are no NGO’s, the one’s that exist are not registered as well as ECD’s.

All the special schools I have visited have a challenge of mixing all disabilities in one class; we are hoping to rectify that with Dr Mvula.

I have visited Brits District Hospital several times.

Hopefully we will have a fruitful 2018!

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