I Love Success Stories

I enter the class, and my non-verbal pupil with autism comes to me and signs that she wants to eat. It's not yet break time, so I say "no". She smiles, hugs me, and with the smile still on her face, she signs "food" again. And I say "no" again.

We go through the smile, hug, sign food, and no two more times, but she doesn't give up. She doesn't lose her smile throughout, she knows it has to work.

Looking at that beautiful smile, I ring an imaginary bell and say "It's break time!"

Experiences like this make my job worthwhile, because I remember when this little girl will throw tantrums if she wanted anything. Imagine a little girl crying, screaming, throwing herself on the floor and biting herself, and everybody else running helter-skelter trying to guess what she wanted. What a life that was.

One year of therapy, learning support, behaviour modification, with her communication skill improving, the tantrums have drastically reduced, she is happy, and everybody is happy; her classmates love her, she does not disturb their class anymore.

This is why we work. This is why we create autism awareness. Different children will respond to therapy differently, don’t forget that autism is a spectrum, but at least knowing and understanding what is wrong with a child helps the parents to find help for their child. And with therapy, the child stands a chance at living a successful life.

Social media is full of stories and videos of people with autism with savant skills, doing awesome things, having a good life. Hardly do we see the struggles the individuals on the spectrum, their parents, siblings, therapists and teachers face.

I am always happy to read success stories; how a child who could not perform a task has mastered it, how therapy is helping a child live a better life, how a child is learning to communicate with speech or an alternative method, how an adult on the spectrum has gotten a job and he is able to do it well because he was not left to himself as a child… These stories are my everyday life. I don’t think that there is anything more fulfilling than seeing a child you work with picking up functional skills, responding better to therapy.

We can only have these success stories when parents decide that they will not hide their children with autism, when they find help for these children. We can only have these success stories if more people are willing to commit their time to getting trained and providing support and therapy for children and adults on the autism spectrum. We can only have these success stories when the society accepts people with autism as part of them and give them the opportunity to be themselves while we work with them to become better people. With more awareness comes more acceptance and support.

April was autism awareness month, and there was a lot of awareness activities physically and through the media. But autism awareness does not end in April. Autism support does not end in April; autism acceptance does not end in April.

Thank you everyone that has supported Autism Awareness in this month. I really want to thank the father who wrote about his son's autism diagnosis, Mr Isaac Osae-Brown, Farouk Hassan, and Godfrey Orji for their contribution to the blog this month. I specially want to thank those who contributed by sharing articles from this blog; thank you for playing your part in this autism awareness. Let us continue in May, in June… all the way to December, and then April next year.

Thank you. 

WELCOME TO HOLLAND by Emily Perl Kingsley

This article explains the heart of a parent with a child on the autism spectrum; the realization that your dreams for child has been shattered. The beauty of the poem though is not in how light it makes the situation seem, or in how beautiful it paints it, but in the hope it gives at the end.

Nobody plans to have a child with autism, but a parent can stay in depression or misery, or can choose to be strong and make the most out of the situation; choose to see the beauty in their child and build new dreams.

                                                                       

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland"

(c)1987 by Emily Perl Kingsley. All rights reserved

WHY AUTISM? by Godfrey Orji

Why autism?

This has become the most frequently asked question since I started The Autism Support Circle Initiative (TASCI) in October 2014. Starting off, our goals were simple; raise adequate awareness about autism in Nigeria and create better care patterns for persons on the spectrum. 

                                                         

                                                                             

We started off with an online awareness campaign – Different Types of Same to raise awareness through storytelling. The idea was to curate stories that will help people understand autism which ours truly, Adelola, was part of. A few blog posts, education through social media and an awareness document was enough to reach over 4000 people, but we had to do more.

Fast forward to July 2015. I had just finished attending the GTBank’s Annual Autism Conference in Lagos and I concluded we needed to do something similar in the eastern part of Nigeria. As Lead Volunteer for TASCI, I had drowned myself in articles, journals, posts, anything at all I could find on autism. I started making notes of possible awareness events that could work here in the South East; precisely on the Federal University of Technology, Owerri (FUTO) campus.

In between countless jots, endless research and the drive for social good, we settled for four events – a radio talk, an awareness breakfast, a bake sale and a discussion session with Public Health students. Our theme for this year’s autism awareness month was Let’s Talk Autism. The reason for this theme was that we didn’t just want to tell people what we knew or didn’t know about autism; we wanted to hear what they thought about autism, what fascinated them about autism, then have a chit chat about roles we could all play.

The questions from the host of my five minutes radio talk on Zanders 105.7FM Owerri were enough to give a first time hearer of the word ‘autism’ a clear view of what it was. I was able to explain the condition, stating the red flags and how therapy helps. You can listen here bit.ly/1pfRtct.

                                                          

While this was ongoing, we were having an open screening of ‘Silver Lining’ at our breakfast event at FUTO’s hostel area. I wouldn’t forget what one of the attendees said to me when I joined in after my radio show. In her words, what is most fascinating about autism is how someone can be ‘so big physically, yet so small mentally’. While trying to explain a few things to her, I asked; are they really small mentally or you don’t yet fully understand them.

Given the sheer enthusiasm to learn more, we had an unplanned event later that evening. Over hot cups of Lipton tea that cool evening, I felt the true strength of a support circle. We talked about allergies, behaviours related to autism, diagnosis, management of autism, cure and so much more. During our discussion, someone asked if a child could pick up autistic behaviour by association i.e can having an autistic parent or sibling lead to a child developing autism? (I still have to do more research on this). To help spread the word, we handed out our Understanding Autism leaflets to everyone present.

                                                               

On Monday, 4^th April, 2016, we had the first ever bake sale in FUTO - cake, juice, excitement and awe-tism. As we interacted and sold cakes to students, we also handed out Global Goals 4 and 10 stickers to show the goals we support. By the end of the event, we had raised enough awareness to earn us a free publication on the university’s Lumen newsprint for the month of April, with a reach of over 3500 students.

                                                         

    

                                                

To round up our awareness week programme, I had a Let’s Talk Autism session with students from Public Health department at FUTO. Autism has often been described as a public health issue and we felt it will be right to take our awareness activities to ‘health stakeholders’ among the student community.

                                                               

A major point of our discussion was the improvement of post-natal care to increase early detection of autism and a better prognosis for persons on the spectrum. What is post-natal care like in Nigeria? How can we make it better? Can we start educating health workers on how to use the M-CHAT to screen children during post-natal care? This were some of the discussions we had. And of course, the age long question of autism and Down syndrome came up.

                                                           

    

To introduce our next project focused on building a real care community for people on the spectrum, we spoke about roles they as (to-be) health practitioners can play to ensure we don’t just stop at awareness. We concluded that our best shot is having more caregivers and special educators. There is a need to get more people interested in special education as a career path. We need to have more caregivers too.


                                                                   

To this end, our goal is simple. Over the next few months, we will start programmes that help interested persons pickup simple caregiving skills, help them understand child psychology better; and in the long run become certified caregivers and special educators.

So why autism really?

We believe in a future where everyone is treated fairly and equally, and has access to quality education that meets their specific needs.

Personally, I know that people on the spectrum are at a huge disadvantage just by being themselves and this is my contribution to creating a better world for them.

So if you feel we are up to something great at TASCI, join our movement to create a true care community for persons on the spectrum.

We tweet at @theautism_sci, and give updates via Facebook on facebook.com/tascinitiative.

We also want to know what fascinates you about autism, so send us a mail via theautism.sci@gmail.com let’s talk autism.

WORKING WITH CHILDREN WITH AUTISM: FAROUK HASSAN

Farouk Hassan is one of the few young people I have met, working with children with autism, with so much passion. I told him once that I still owe him a date, because he is such an inspiration.

In celebrating this year’s autism month, I asked Farouk to write about his experience.


                                                           

“Working with children with exceptional needs, particularly children with autism has been one of the most exciting learning experiences I have had to engage in. Children with autism are intriguing and distinctive individuals. They are a bit challenged when it has to do with social situations, yet their minds are filled with a lot of social conversations that they try to express to the very best of their abilities.

I never dreamt about working with children with exceptional needs (as I like to refer to children with special needs), given the fact that my childhood ambition was to be a biochemist. It was in my 2nd year at the University of Jos, Nigeria, that my desire to build a career path around children with exceptional needs got its strong hold.

Ever since then, I have had my share of being a part of the transforming phase of these children and during this course, I have noted some observations. First is that children with autism are interesting learners. They can metamorphosize from a child who dreads holding a pencil because of its surface texture, to a child who enjoys drawing with another particular pencil with a better surface texture, due to the fact that it can comfortably facilitate him/her in expressing an artistic inclination and capability. The key to understanding this tendency I believe is to closely observe and understand what prompts the interest of the child with autism in participating in activities.

Secondly, the key to managing autism is consistent generalization. The term generalization when used in special needs education involves the ability of children with exceptional needs to use and apply skills that they have learnt, both functional and academic, in new and different environments and situations. My observation about generalization is thus; consistent generalization ensures that children with exceptional needs will be able to successfully complete specific activities independently and not rely on a certain reinforcement only found in one learning environment. Also it provides these children with more ways to achieve desired outcomes despite changing circumstances, especially if the child’s special education intervention was initiated early.

I also believe that families have a greater part to play in enabling their children with autism achieve independence, by making conscious effort to attend IEP meetings for the benefit of their children’s progress in intervention programs, and being part of activities given to their children.

Nevertheless, the greatest part of working with children on the spectrum is when they are meeting the milestones set for them. It motivates you in putting effort and enthusiasm into achieving more.

Children with autism are adorable individuals. You just have to build a bit of patience and persistence with them, and in turn watch them rise pass expectations.”

                                                                   

With other members of staff of CADET Academy

Farouk presently works at The CADET Academy in Abuja, a top center that provides therapy and solutions for children with special needs.

AUTISM AND TRANSITION: FROM SCHOOL TO WORK PLACE. (PART TWO)

I mentioned on Monday that this week was about transition for our adults on the spectrum. And Mr Isaac Osae-Brown, a resource person and a special needs education specialist in the US,  has been speaking to us on the topic.

Here is more from him on the topic:

                                                      

" Services and Supports:

     Individuals with ASD need a number of interventions to improve their communication and social functioning in the academic environment. Research has demonstrated the efficacy of a variety of techniques which include social stories and comic strip conversations. Advances in technology have created new employment opportunities for individuals with disabilities. Research also reveals that Americans with Disabilities Act of 1990 and other federal legislation have mandated the provision of reasonable accommodation, including assistive technology to all individuals who might benefit from them.

     To integrate meaningfully into the community after post-secondary education, adolescents with moderate and severe autism will need appropriate training and education in assistive technology and work-based experiences. The use of the Picture Exchange Communication System (PECS) enables young adult with autism who lack functional communication to initiate requests to describe what they want. Another effective strategy for use with students with ASD in the learning environment is the Smart Board interactive activity. Several researchers believe that Smart Board computer technology can enhance the effect of social stories in teaching social and behavioral skills to children with ASD. According to the researchers, social stories involve the creation of stories using photographs of students on the Smart Board. Students engage in stories while their interactions and behaviors are observed. Smart Board can be used as a computer for users to easily import many types of information, including video clips, short films and music.  

     The interactive nature of the Smart Board and the Picture Exchange Communication System offer many practical uses for providing social interaction and communication. As students with moderate and severe ASD leave the safety of the educational system to the workplace, post-secondary and related support services may be needed to ameliorate language and social deficits and to facilitate personal and professional development.

                                                         

Preparedness for Transition issues:

     Since getting employment provides a source of reasonable income and enhances social esteem and social connections, adolescence with moderate to severe autism disorders need adequate preparation for work-based learning. According to the researchers, these students need to know information about mobility requirement, transportation alternatives, appearance, dress code and interpersonal relations.

     The demand for vocational, problem-solving, behavioral and cognitive skills such as how individuals handle success and failures on the job are all positively related to job success. Sitlington et al (2010) revealed that along with the need for core academics, there is also a great need for good interpersonal and personal skills such as responsibility and self-esteem to thrive in the workplace.

        Providing basic occupational information about world of work to students with autism is a challenge and so they will need adequate training and preparation with the help of job coaches and developers who can assist these students to know some basic information on realities of the workplace. Educational researchers reveal that since work has several reward systems and is bound by time, adolescents with autism need to know work habits and attitudes and know what is required to maintain employment by performing work routine adequately and handling any problems that may arise at the work place. With the support of career and technical education (CTE) and school-to-work staff, students can build competency in basic reading, problem-solving, sociability and technology. Students with autism spectrum disorder should be taught about disability disclosure, workplace self- advocacy, and how to request reasonable accommodations.

     These students gain basic and high-level technical competence through work and so there is a need to have them identify task that teach technical competence, rotation through several placements within the workplace and the recognition of personal and social competencies as key learning objectives.

     Lee & Carter (2012) highlight high quality employment preparation by stating that as students with autism are ready to seek jobs after graduation, practitioners in vocational agencies can further assist them in specific job-seeking, job-coaching, and job-maintenance skills and in developing effective problem solving and coping skills for dealing effectively with work-related issues. In addition, the students should be given supportive opportunities to practice and deepen self-determination skills within the settings in which they will ultimately need them. Difficulties exits however, due to social and pragmatic interaction deceits and unusual repetitive behaviors that can create significant barriers to finding and maintaining employment with adolescence with moderate to severe autism spectrum disorder. 

     Ample evidence-based interventions are documented concerning transition services for students with emotional disabilities, behavior problems, and disabilities involving greater cognitive impairment (e.g. low-functioning autism), as well as vocational services for adults with persistent physical and mental illnesses. These elements, according to researchers, provide a comprehensive, collaborative, and longitudinal framework for clinical and research interventions aimed at fostering successful employment for students with autism spectrum disorder.

       Thus, while assistive technology accounted for the growth of communication and social skills, work-based learning programs which include occupational awareness and employment-related knowledge also amplify human development allowing adolescence with moderate to severe autism to observe and perform hands-on work, develop work readiness skills, and learn to draw their own conclusions.

                                                               

Solution to the Problem:

     Adolescents with moderate to severe autism spectrum disorder need transitional goals and activities planning to function effectively in the workplace. Transition goals activities should be developed to address the following domains: Academic skill, Social skills, Employment skills and Recreation/Leisure skills. Activities in the academic domain should include writing a narrative story about a disability, reading  aloud vocabulary words that relate to the students’ disability, and using  computers to search the web about information that relate to students’ disability. The use of assistive technology will help to augment their processing and memory functions.

     Social skills activities could include learning to be sensitive to other’s feelings and preferences initiating conversations, sharing and respecting other’s property. This will enhance pragmatic skills; build self confidence and positive social interaction. Students with autism spectrum disorder are limited in job related issues and need to know work habits and attitudes. They also need to know what is required to maintain employment by performing work routine adequately and handling any problems that may arise at the work place. To address this, students should be prepared to participate in a mock interview with the assistance of teaching staff and learn to fill out job application with the computer. This will improve sociability, integrity and self-esteem that will help them to conduct focus career exploration and make reasoned choices about their future.

     To be prepared and transition effectively in the workplace, students with autism disorder need to expand their awareness of leisure alternatives and understand the value of skills relating to social expectations and self determination. Some activities needed to address this problem would be having students watch educational documentary programs and movies with peers, and playing games together within a structured setting. Effective implementation of goals and activities in the aforementioned domains will help prepare adolescents with moderate to severe autism disorders to transition effectively from school to the workplace"

AUTISM AND TRANSITION: FROM SCHOOL TO WORK PLACE. (PART ONE)

Yesterday, I mentioned that I will be sharing Mr Isaac Osae-Brown's  papers on Autism and Transition. Today, I am sharing the first part; a paper he presented at the Special Education Graduate School, California State University Dominguez-Hills.

How can we help our adolescents and adults live successfully in our society? Can we help them do well in the work environment? These are questions I hope we can answer this week.

                                                    

Speaking presentation session

"Autism: Theoretical Perspectives:

  A review of literature revealed a debate that exists regarding autism spectrum disorders. While some think that it is a clearly defined disorder, others argue that it is a spectrum of undefined and varied characteristics. Increasing evidence from researchers support the hypothesis that autism is a quantitative or dimensional spectrum with no clear qualitative distinction between traits found among individuals with the disorder and the general population. Internationally, most researchers agree that there are several primary characteristics of the disorder.

     The term Pervasive Developmental Disorder (PDD) and Autism Spectrum Disorder (ASD) have frequently been used interchangeably. According to researchers, there are five categories of disorders included in the spectrum under PDD and ASD which include: Asperger disorder, Autistic disorder, Rett’s disorder, Pervasive developmental disorder and Childhood disintegrated disorder. Someone with autism spectrum disorder has one or more classic deficit in communication, repetitiveness and language.

      Other researchers have studied the impact of autism on children and that more students all over the world are being diagnosed with autism every day. They state that while the causes of autism are still uncertain, it’s estimated that 2.64% of the American population is autistic. Wallis, (2006)  states that there are still more questions than answers about autism after this disease was first described 60 years ago by American psychiatrist Leo Kanner and concludes that today, about 300,00 school age Americans children and many adults with autism are attempting to get through daily life.

TRANSITION:

     The education law 20 U.S.C. Section 1402 (34) defines transition as a coordinated set of activities designed to be within a result-oriented process focused on improving the academic and functional achievement of the child’s movement from school to post-school activities including post-secondary, vocational, integrated employment, continuing and adult education, and independent living. There is optimism that with the appropriate training and education, young adults with autism spectrum disorder can integrate meaningfully into the community. The transition from school services to adulthood can be challenging for individuals with autism who face significant obstacles in multiple areas as they attempt to negotiate their way into college, work, community participation and independent living.

As these individual students leave the safety of the educational system, post secondary services and related support services may be needed to address a wide range of educational issues.

     For instance, speech and language as well as occupational therapy would be needed to ameliorate or enhance language and activities of daily living to those who face more challenges in speech. Students with autism spectrum disorder would need a transition process that includes completing school, gaining employment, participating in post-secondary education, contributing to a household, participating in the community and experiencing satisfactory personal and social relationship.  

                                                            

After a speaking session with graduate students at the California State University Dominguez Hills

     Can adolescents with autism be prepared to cope with daily life by using available educational resources and training from teaching professionals to transition effectively from school to the workplace? Currently, leaders in education and job training in the United States are demanding a systematic redesign of secondary education and transition service delivery for all youth, particularly those with disabilities. (Education Policy Reform Research Institute, 2004).

What kinds of services or support can we provide for these young people for effective transition? How do we prepare them for transition? Mr Isaac Osae-Brown still has more to say. 

Let's talk more on Autism and Transition as we conclude on the series, on Friday, April 15.
It is still Autism Awareness Month.

AUTISM AND TRANSITION: ISAAC OSAE-BROWN

From my first day in a school for individuals living with autism, I have been very aware that there are young adults and adults on the autism spectrum, but somehow I have been more focused on early intervention. Even though I had worked with teenagers with autism, the future for Nigerian adults on the spectrum had never bothered me. Until I met a 21 year old on the autism spectrum, and that changed my focus. This year, I have been reading a lot on transition and interacting with people in the community on transition. I cannot help but ask what the future holds for the children I am working with right now; what can we do to help people living with autism who are already adults?       
                           

Throughout this week, I will be sharing Mr. Isaac Osae-Brown’s papers on Autism and Transition from School to the Workplace.

                                  

Isaac Osae-Brown is very passionate about helping individuals with special needs become successful in education and in life generally. He earned his Masters degree in Special Education with an emphasis on Moderate/Severe at the California State University, Dominguez - Hills. He also received his level II Education Specialist Clear Credential (Moderate/Severe disabilities) and Administrative Service Credential from the same California State University to manage public schools and provide instruction to all students with multiple disabilities including Autism. Isaac has taught in urban Special education classrooms for over eight years, given professional development sessions in the United States. Additionally, he has been a consultant for the UNDP in Lagos where he supervised all graphic design, publishing and communication projects to develop the cognitive skills of children.

                                                             

Parents collaboration

Isaac also holds a Masters in Communication and Language Arts from the University of Ibadan and a bachelor of Fine Arts (Graphic Design) from the University of Ife, now Obafemi Awolowo University. He has produced several research papers in administrative leadership and special education and has attended national workshops in the United States on Special Education law, Autism, Assistive technology and Positive Behavior Intervention. Isaac is certified by the U.S. Board of Education and is authorized to provide instructional services to all students with disabilities and to lead in public school administration. He is currently a member of the National Education Association (NEA), California Teachers Association (CTA), Council for Exceptional Children (CEC) and School Leadership Program (SLP) in the United States. Currently, Isaac works with the Los Angeles public school system in Compton, California.

Isaac travels around the United States and other countries speaking to parents and professionals on how to help their children with special needs become more successful. He is a passionate public speaker, and he believes that with motivation and the right tools, individuals with special needs can do well academically and generally in life.

                                  

Motivating students with autism at the Very Special Arts festival in Los Angeles.

This week, Isaac will share his thoughts with us on building independent adults with autism, integrating our young adults and adults into the society, helping them transit to and function well in the workplace. You need to come back tomorrow to read what he has to say.

The News that Changed me Forever

World Autism Awareness Day 2016, April 2, has passed but it's still Autism month, and we are still talking about autism. Last year April, a mother who has 2 boys on the spectrum shared her experience with us on the blog. This year, a father is sharing his experience. Wow!

Children with autism do not have mothers only, they also have fathers. And I am excited sharing this father's story because I cannot forget the first time I saw his Twitter account; his bio tells us that he has a son on the spectrum. I am particularly impressed because this is Nigeria, where people are not so open about their children's challenges. So it is amazing to see a Nigerian man talk about autism openly, using his son as inspiration. Read his story about getting a diagnosis for his son:

"Thin voice that had caused dryness in my mouth, continued. ‘I can see mom and dad are not prepared for this.’

I turned my head to my partner beside me. When we interlocked our hands, I’m unaware. I can tell she’s suppressing her reaction to the news; her lips are rolled in firmly. She closed her eyes. With thumb and index fingers of her right-hand she dragged pool of water that formed on her eyelashes to her nose bridge. My jaw quivered. I become aware that I’m crying, too.

Clearing my throat, ‘Are you sure?’

The hijabi paediatrician, nodded. ‘It’s a lot to take in, I know.’

The wishful part of me gazed at our son fiddling with movable light attached to the exam table with blue disposable sheet. As usual, his numerous toy cars he wouldn’t leave home without are on windowsill of the doctor’s office, like cars in Lagos traffic.

It had bothered us that aged three, our son, was yet to say a word. When he began to walk at twelve months, his narrow interest of lining up his toy cars, stacking tin-food, watching the washing machine spin in the kitchen became obvious. Though we didn’t think it unusual then – ‘boys are late-bloomers,’ we thought.

And then, at eighteen months, we enrolled him into a nursery. During his settle-down week, my partner and I were shaken to discover that all of his classmates were responding to their name, showing awareness of the class supervisors and called their attention to play objects by finger pointing. They could also babble, discernibly, words of some sing-a-long rhymes. All of which our son won’t do then, and has neither shown interest nor ability to do, now.

Initiated by the paediatrician, in the past ten months, we had attended different clinics in our local community to have our son assessed by, first, an audiologist, then an occupational therapist, an educational psychologist, and lastly, a speech and language therapist. And now, the paediatrician, within one minute of sitting in her office, informed us that all the professionals observed that our three-year-old son is on the autism spectrum.

My mind is still racing in many directions, unable to focus. It doesn’t look like my partner wants to be in this consulting room any longer, either. We had only heard of this disability in these recent months of attending our son’s many referred appointments. One child in every hundred is autistic in Britain. There is no cure. Why is our son that ‘one’ child?

The British-Asian doctor’s voice pierced my thoughts, again. ‘It’s the last thing you want to hear, as a parent. I know.’

Disability to me was physical: discoloured eyeballs, mute eardrums, a withered arm, or depending on a wheelchair or crutches, for mobility. None of these, yet our son is disabled? I’m angry. The stigma of the label troubles me. Sniggers we get from passersby when out in town will merely turn to sighs of pity, if we said.

‘You don’t have to include disabled on our son’s health record, do you?’

My partner nods. I could tell she shares my thought. Both of us stare at the paediatrician who, though using empathetic words, keeps a blank face. She touched brooch holding her turquoise head veil, which also covers her shoulders, in place. ‘It’s your choice, as parents, whether to have your child officially diagnosed or not.’ And after a pause, ‘You don’t have to make that decision today,’ she added. ‘I’ll give you some materials to take home. There’s support for autistic persons and their family. But I must tell you, early intervention is vital. Without a diagnosis, he can’t access any support.’

The change in the paediatrician’s voice tone toward end of her statement was enough to tell she isn’t simply informing. It’s a warning.

As if to ensure that we understood her, after typing ‘Parents made aware of ASD condition’ into our son’s health record page on her computer screen, she turned to us.

‘Our community struggle the most to accept an autism diagnosis.’

I quickly gathered that with ‘our’, the doctor meant Asian and African community in Britain, herself being of South-Asian descent.

She added, ‘The parents come back too late. Please don’t do that.’ Her face yet blank. But this time her tone suggests she’s disturbed by this observation.

Our son is crying, tugging at his mom’s legs. He had tidied his cars and we hadn’t followed him when he walked to the door. He’s frustrated. He punches and wriggles as my partner lifts him to thigh.

‘I won’t keep mommy and daddy any longer. I promise.’ Ending our appointment, the doctor passed three leaflets to us. The leaflet she picked from beside her computer on the desk, reads ‘EarlyBird programme,’ National Autistic Society (NAS) below. The other two she retrieved from her drawer informs about Special educational needs, and Disability living allowance (DLA), respectively. 

Hooking her reading glasses atop her hijab, looking solemn, ‘You don’t have to book another appointment to see me,’ the paediatrician said. ‘A phone call that you’re okay with the diagnosis will be fine.’

It’s April again; World Autism Awareness month of the colour blue. Our son has turned 8, making educational and social progress undoubtedly impossible without readily available support and care. My partner and I were both blind to disability in general, before our son’s diagnosis. It’s easy to be.

And while I welcome parent driven autism initiatives in Nigeria; associated cost of autism support, to society and the affected family, put at £1.5m, makes it a Sisyphean task without targeted support from the Nigerian government (Federal and States), plus intensive campaigning on day-to-day challenges faced by persons living with disabilities in Nigeria.

Sadder, this past month, it was revealed that autistic persons are dying ‘thirty years’ younger than rest of the population in Britain. How young do autistic persons die in Nigeria, where average life expectancy is 54-and-a-half years?"

Walk for AUTISM: How I spent my World Autism Awareness Day 2016

What a day it was today!!! I joined a host of people for the #CompassionUnboxed Walk for Autism in Lagos, Nigeria. We walked from the Guaranty Trust Bank at Town Planning bus stop, Ilupeju to Jibowu Bridge and back. We stopped to share flyers to other passers-by; those walking, driving in their cars, even passengers in public buses were not left out. We also had the opportunity to speak with some of the people about autism.

What was strange to me was how some of the people we spoke with had never heard the word “Autism” before. What?! In the City of Lagos?! It was quite strange because someone, that also joined the walk, had said “people in Lagos already know autism, we should go to the rural areas or at least the suburbs”. Apparently, autism awareness in Lagos is definitely not complete; we still have a lot to do.

The walk was exhausting, but it was so much fun. It was so good to see people in the Nigerian autism community come together for a cause. It was also good to see people that are not related to anybody on the spectrum, either as family or as professionals, show their support by joining us to walk and create awareness.

I do not have many pictures to share, but I’ll share the few that I have. When I get other pictures from other participants, I hope I will be able to share more pictures.


                                               

This caption welcomed me to the meeting ground, GTB Ilupeju

                                                  

It was really awesome seeing these ladies, Onome Asuruka and Bukola Shobanjo

                                                 

Mr Emmanuel Taiwo saw my tweet about the walk and showed up. Is that not awesome?

                                     

Participants at the Bank

                                                                  

Nikki Laoye performed after we returned from the walk, and some participants joined her in the dance

Thank you GTBank , Patrick Speech and Languages Center, TLP Center, Children Development Center for bringing us together

Happy World Autism Awareness Day!