1. There are many misconceptions about autism. What are the most common ones you have heard?
1a. the misconceptions about Autism stems mainly from how the society we are in perceives the disorder. The most common I have heard is the description of Autism and Autistic children as "Imbeciles". It is this kind of description that makes Parents hide their Autistic Children at home, away from social associations that they so desperately need.
1b. there is also the misconception that it is a "Spiritual disorder". Or put in another way, an attack from the devil. Nothing could be further from the truth. This is a primary reason why parents who should have sort early intervention choose to delay treatment thinking that the mere admission of the disorder is in itself some kind of surrender to the devil.
1c. Autism is not Down syndrome. It cannot be easily detected with a blood test or immediately after birth. The older the child gets the more accurate the diagnosis. This is why it can be extremely frustrating for parents because no medical personnel worth his salt will diagnose a child less than 2 years as ASD. It is perfectly normal for a child to meet the normal physical milestones and still be autistic.
2. OK, now we know what autism is not. But, what is it really? How would you describe or define it?
2a. First I must say I am not an expert on Autism. I am just a parent of an autistic child learning my way around the subject. Autism is at its core a Social and Communication Development disorder. Characterized by inappropriate responses in conversation, misinterpreted nonverbal interactions, and significant challenges in age-appropriate bonding/friendship development). The first signs usually obvious to parents is speech impediment and a lack of interest by the child to use or attempt language. Other signs are the violent outburst of anger tantrums, a lack of interest in anything but extreme focus on a particular thing, game or food.
3. As a parent of a child with autism in Nigeria, how do you manage any stigma around the condition?
3a. Stigma is one reason why parents live in denial about their children's condition. So one way to manage it is to move from denial to "Acceptance". Acceptance is not an admission of defeat, rather it is an affirmation of a willingness to fight the disorder and the Stigma. This acceptance allows you to look upon your ward not as one with " a problem ", but a special child with special needs. That change of perspective is very important to allow parents to confront the stigma they would face concerning their wards.
3b. On the flip side, the same way we fought stigma against people living with AIDS, we must fight stigma for people living with ASD by creating awareness about the disorder and disabusing the minds of people about it.
4. Some of us feel autism isn’t common here. What do the statistics say for autism in Nigeria?
4a. According to the CDC, 1 out of 68 children in the US will have Autism. (1 in 46 boys, 1 in 189 girls). There are no known statistics on autism prevalence in Nigeria, but we can assume we are not too far from the CDC figures. In fact, some will argue that the increase in diagnosis is a sign that the number might be higher. It's hard to conclude on that because we don't know whether the increase in diagnosis now is as a result of more awareness on the subject or improved medical advancement that aid early diagnosis.
5. Take us through the journey of discovery. What signs and symptoms did you notice in your son that got you worried?
5a. We didn't notice anything strange until he was 18 months old. Prior to that, he had given us no reason to be concerned. He was a perfect bubbling baby boy. Walked when he should walk. Would mumble stuff and humm songs like any toddler will do. He just seemed never to come out of that behavioural stage. At 18 months in, he became reclusive, he would not respond to his name. At first, we thought he had a hearing defect. Tests showed that his hearing was perfect. Then came the violent anger tantrums. He wanted his way 100% of the time and if he didn't get it he would flip, sometimes hit his head on the wall violently... Grab at anything and throw it. The more frustrated he got, the more violent he became. I kept telling myself. 'He is a boy...Boys are usually slow...He will snap out of it'. Sometimes, the tantrums lasted all night. No one slept... Including the neighbours. Soon caring for him left us exhausted. Daily.
6. How important is early diagnosis to managing autism effectively?
6a. It is extremely important. We must understand that it is called a Spectrum because the level of exposure varies for different children from the low to the high end. Daniel was diagnosed at the low end but whether low or high early intervention is key. In fact, the CDC coined the word ALARM to summarize recommendations for developmental screening, surveillance, diagnosis, and management of ASD.
ALARM stands for:
• Autism is prevalent
• Listen to parents
• Act early
Children who get early diagnosis and early intervention have been known to be able to manage Autism much better than those who start late. There is no medical cure for this order. It's all behavioural and Speech therapy which can range from intensive to mild.
7. What does diagnosing autism involve? Which tests have to be done?
7a. Diagnosing ASD is not easy. There is no blood test to determine it (unlike Down Syndrome). It's all behavioural. There are two stages of testing. There is the behavioural screening. This is just a process of screening for developmental delays. It can take place at 9mth, 18mths and 24-30mths. Even if your child is not showing any signs of Autism, it is important to ask for this screening by a qualified medical practitioner just to be on the safe side.
7b. The second test is "Comprehensive Diagnostic Evaluation". This thorough review may include looking at the child’s behavior and development and interviewing the parents. It may also include a hearing and vision screening, genetic testing, neurological testing, and other medical testing. Specialists who can do this type of evaluation include:
Developmental Pediatricians (doctors who have special training in child development and children with special needs)
Child Neurologists (doctors who work on the brain, spine, and nerves)
Child Psychologists or Psychiatrists (doctors who know about the human mind). They typically have tools that they used to measure development and establish a diagnosis.
8. Do children with autism act alike? Does each child act and react differently?
8a. No and this is the interesting part. Autistic children act differently depending on where they are on the spectrum. Some are very emotional while some appear to want to avoid human interactions. Each autistic child is unique in the way they see and react to their environment but the one common thing about all of them is that they almost always need help and support.
9. What special dietary requirements does a child with autism have? How have you coped as a parent?
9a. The idea is to as much as possible have a gluten-free and casein-free diet, called GFCF. Although there are no definitive studies on the GFCF diet effects, there is growing evidence that nutritional therapy can really make a big difference to children with autism. Thus, food containing wheat, and dairy products should be avoided. Casein, like gluten, is thought to be metabolized differently in autistic individuals, causing symptoms such as communication and social deficits classic in autism, according to Autism Speaks. Look, it’s easier said than done but the point is to have a balance because you also want to avoid possible nutrient deficiencies like Vitamin C. You might also want to avoid carbonated drinks because Autistic Kids are known to react differently to sugar. Preferably, introduce them early on to fresh juice or natural sugar. Changing cookware is also recommended. You might want to avoid cookware made out of stainless steel and use instead that made out of titanium. This is another example of how caring for an Autistic Child can be a very expensive venture because titanium cookware are not cheap.
10. How have you been able to manage your son’s health in Nigeria?
10a. It has been a challenge. We had to change hospitals recently when we realised that we kept on going back to a particular hospital for the same illness every two months. We opted for an older doctor who is a paediatrician. I spoke recently with a lady from Warri who told me that for years she kept on taking her son to the general hospital and no doctor told her about Autism. She discovered it by herself. We must expand this conversation to include the need for GPs treating children to always run behavioral development screening whether the parents asked for it or not.
11. Has your son always attended a regular school? How did this go?
11a. Yes he has. Even when he was doing his intensive therapy he was still going to regular school. It was a bit of a stretch on the young man and on us but we knew he could handle it. For his nursery school, we were blessed to have the support of the school proprietress who took him under her wings and made sure he didn't feel out of place. For his primary school, we have had to change his school twice because we were concerned about how he was being handled and I have had to go to his school a couple of time to meet with the head teacher to discuss concerns about the way he is being handled. The point must be raised that all schools must be inclusive and be able to have facilities and teachers that can handle special needs children. Going to regular school is part of the process of development of an autistic child and any school that cannot be inclusive should not be registered.
12. Tell us some interesting things about your son. What is his ‘difference’ like?
Daniel is extremely affectionate. We call him the "hug master". It is important for him to feel he is loved by people around him (Parents, teachers and friends). He is very intelligent with a very analytical mind. His sister once shared her animations notes with him. She came home one day to find him designing animations by himself. We feel we have a genius in our hands and we need to manage him with care. At 10, he is a good chess player and the best in his school. He doesn't play football or have any interest in football. If you ask him what he wants to be, he will shout INVENTOR.
13. Are these usual for children on the spectrum?
Typically, it is said that their slow growth in one area makes them to develop more capacity in other areas. They are usually known to pay attention and focus on specific things. If it is playing a musical instrument, they are usually very good at it than most. They have the tendencies to over-compensate in one area for what they lack in another area.
14. How much should other parents worry about their autistic child living well-adjusted lives as adults?
14aI won't want to use the word “worry” bcos it depicts negativity, I'll rather say parents have reasons to be concerned. And it’s the reason why we must advocate about this. With the right kind of support, an Autistic child can live a normal life well into adulthood. Howbeit slower than the regular person. The key to this is the level of support they are getting. An autistic person will always need support and it is important they have a system around them that guarantees this.
15. Have you met any adults who were once kids on the autism spectrum?
15a. Yes...I have and you will be surprised how many people (adults) around you who are autistic but they never knew.
16. What would you like other parents of non-autistic kids to know and do?
16a. Act Normal. You can stigmatize even when you think you are trying to help. So act normal around the child. Don’t over-dramatize. Don't behave like "something is wrong". Parents of autistic children notice that. So try and be sensitive to them.
16b. Offer to help. Offer to watch over the child for a day while the mum or dad of the autistic child go out for a date night. You cannot imagine what that will do for their relationship. Caring for an autistic child can be exhausting.
16c. Whatever you do, DON'T STIGMATIZE. Autism is not a death sentence. Yeah slow does not mean crazy. Be patient with the child
17. How were you able to communicate to your older child to enable her care for and understand her brother? How old was she when you told her?
17a. We basically called her and told her we needed her help. To be honest, we didn't need to because Tomisin just took to helping Daniel with his therapy and his homework. She was 8 years old at that. But we spoke to her because we felt she needed to understand and because we needed her help with Daniel. Daniel became very much bonded and dependent on his sister for many things. She is a strong support base for him. Whoever is going to marry him must know that she will have to marry the sister along.. Lool
18. You mentioned that you won’t have any more children. Did having a child with autism influence your choice?
18a. No. It didn't. We had decided that we wanted two children and we spaced our children in line with our plan.
19. Managing autism is quite expensive. What is your biggest cost and how can one manage that better?
19a. The biggest cost obviously, is the cost of therapy. It is not cheap. And there is a reason for this. There are not many who specialize in that field of behavioral psychology. Therapy is often times dedicated. Meaning it almost often has to be concentrated on one child per time. Even with the high cost of, there is no guarantee of recovery or success. Only a sense that you are doing all you can. Unfortunately, some parents have had to make the difficult choice of choosing between paying for therapy and going bankrupt or not paying for therapy and continue to manage it locally. Most parents choose the later depriving the child of the help needed. There are other attendant cost as well like Care giving (provision of a Shadow), logistics, feeding (including changing of cookwares). But for me the most expensive is therapy.
20. What can we the community, the general public and Govt do to help kids with autism?
20a. I believe one important element in the development of Daniel was the support we got from the “Community” we belonged to and also Family and Friends. The Church community was amazing as they rallied around us. My Family Members were incredible as they provided both emotional and financial support. So what can you do?
Create Awareness: Let’s get comfortable talking about Autism. The more we talk, the less will be the stigma.
Support: Corporate Orgs & Individuals can decide to support or sponsor an institution providing care for Autistics kids. An org like Patrick’s Speech and Language Centre has to worry about paying the rent, energy cost, paying staff. If those operational costs are taken away or reduced, trust me, they will be in a better position to provide their services at a cheaper rate.
Funding: Government can also help on all front, not only to increase awareness, but they can help in areas of policy and funding. For instance, government can establish policies that mandate schools (private and public) to be “Inclusive” and have capacity to care for special needs children as a pre-requisite to being registered or have licenses withdrawn. They can also make compulsory, behavioural screening for all children older than one a part of their primary health care policy. They can also make sure that they allocate budgetary funding to assist parents of autistic children and the kids themselves. The UK has done it with its SEN (Special Education Needs) programme. Why can’t we do it here as well?
21. The theme for the 2017 World Autism Day is ‘Toward Autonomy and Self-Determination.’ What does that mean to you?
21a. It means several things. First, on the legalistic side, it means the right of the person with Autism to independence and autonomy must be respected. The Convention on the Rights of Persons with Disabilities (CRPD) highlights their rights to "legal capacity on an equal basis with others and in all aspects of life”. This must be emphasized. As an Autistic person I should have autonomy to enter into legal contract without that ability being questioned. There are certain provisions of law that require you to be of a certain ability to be seen as “qualified” to make certain representation. The question ultimately should be “Am I a Human Being”? If the answer is Yes, then I must have autonomy like any other human being.Beyond the legal argument is also the need to discuss the moral and ethical argument especially about the need for “Inclusion”. The more we learn about ASD, the more the society should be more inclusive to accept with no condition, people with this condition. They are human’s like you. They have emotions. They can love and can also be unreasonable. We are better as a society when we help and look after those who are weak and vulnerable among us and not just the strong and healthy. We need society to give them a chance to become who their creator called them to be – CHAMPIONS!