Ninety-Nine or One?

Wow! It’s been such a long time I posted here. I’m really sorry for the looooong delay (that sounds like tautology right? At least in my ears)! I've really missed this blog. And I repent today. You won’t have to wait long for subsequent posts (I pray).

“Then Jesus told them this story: If any of you has a hundred sheep, and one of them gets lost, what will you do? Won't you leave the ninety-nine in the field and go look for the lost sheep until you find it? And when you find it, you will be so glad that you will put it on your shoulder”. (Luke 15:3-5. Contemporary English Version)

Many parents tell the story of their child being rejected by a school because the child has autism (and may have been displaying some challenging behaviours). I remember being angry the first few times I heard such stories, but overtime I realised it was better the parents found a school that would accommodate their child than insist on keeping the child in a school that may be hostile to the child, which won’t help anyway.

Sometime recently my boss and I considered going round mainstream schools around our community to create awareness on autism and probably organise trainings for the teachers, so that they can handle any child they suspect may be on the spectrum.  At the first school we went, the Headmistress did not mince words in telling us she was not interested in any awareness or training, as she had no plans of accepting any child with special needs. She was really angry that we even considered coming to her school for training. Needless to say, we left that school extremely sad. We were sad because we feared for any child in that school that may be on the autism spectrum, or may have any other related disorder.

In the scripture above, Jesus told the story of a shepherd that left ninety-nine sheep behind to find a missing one. And I ask myself if as shepherds, either as teachers or parents, would we have gone out of our way to find that ONE?

I believe strongly in the idea of “no child left behind”. Some people in Northern Nigeria are campaigning for education for the girl-child. Some of us are campaigning around the world for education for children with special needs. In Nigeria, at least, there are still some families that keep their children with autism locked up because they think the child cannot go to school or the child is a waste. Please that child can go to school. There are mainstream schools here in Nigeria that provide special education and learning support for children on the spectrum. And there are special schools or centres that provide special education to meet the needs of these children and to help them develop skills that they need to achieve independence.

I hope that with the autism awareness campaign going on in Nigeria now, school proprietors will be encouraged to provide quality education for children with autism and children that have other types of special education needs. If autism is as common in Nigeria as reported, there is a need to provide education for the children on the spectrum that are around us. Like the illustration in Jesus’ parable of the lost sheep, do we want to leave these children that we consider as different, without help? Do we want to leave them in a wilderness? I hope we all answer NO. If as a school proprietor, you want to help, you don’t have to just provide somewhere for them to go everyday. Employ the services of special needs teachers or send the teachers you have in your school for training. You must decide that you want to give them QUALITY education.

In our campaign for quality education for children with special needs, we would not overlook neuro-typical or regular children (children that do not have autism or related disorders). Although that shepherd left the ninety-nine to look out for the missing one, we are not saying “neglect other children”. No way!!! It’s actually not a question of “99 or 1?” What we desire actually is 99 and 1. A situation where regular children, male or female, and children with special needs can have access to quality education, regardless of the social class of their parents or their location in the country.

Thank you for reading... I’ll be back with more autism gist.

Happy World Autism Awareness Day

I wrote this for a friend's blog a while ago. Today is World Autism Day and it just seemed perfect to share this today. It's simple and can easily be shared.

A woman discovers that she's pregnant and she's happy. It may be the first, second or maybe tenth child she's expecting. Apart from the difference in experience, the fact that she's expecting to give birth safely is the same.

Some months later,a child (let's say a boy) is born and everyone rejoices. He doesn't look different from a regular child. The doctor and the parents have no cause to worry. He seems to grow normally; crawling at the right time, attempts walking at the right time etc. But then at 18 months, the mother notices that her child is not talking. It dawns on her that he didn't babble at 9 months and then she starts getting worried. She runs to the paediatrician and he says it's late development; boys sometimes develop later than girls. Her mind is put at rest for a while. But then she begins to notice other things; he doesn't seem to notice people around him,he does not play with the other children, and it seems he does not like to be touched, he avoids eye contact with people. She notices other strange behaviours; he flaps his hands, covers his ears, arranges things in a particular order, he does not point at what he wants but would lead a person's hand to his object of interest. She also notices that toilet training seems harder for him to grasp. She is getting more worried,but the doctor does not recognize that something is wrong.

Now he's almost 3 and things are not getting better, then the truth is revealed. Her son has AUTISM. How? Why? What did she do wrong? What did she eat when she was pregnant? Was it the age when she conceived? The doctor tells her that it's not her fault. Autism is a disorder whose cause is not known and is certainly not a parent's fault.

He tells her that Autism is a neuro-developmental disorder that affects a child's social, behavioural and communication skills. Some children actually talk and acquire some skills at the right time,but lose these skills before they are three. It is more common in boys than in girls,with a ratio of 4 boys to 1 girl. In the US, autism is found in 1 out of 88 people. Nigeria does not have documented statistics,but autism is getting more common around us...

The doctor continues to talk, but it's all a blur as she sits there crying and wondering what the future holds for her son. Will he ever talk? Will he be able to go to school like other kids? Will he live an independent life like other children? Different questions run through her mind and she has no answers.

The truth however is that her child can attain independence like every other child if she seeks help. He can go to school like other children. Therapy is available for children with autism in some states in Nigeria. And the different types of therapy available are to help the child attain maximum independence. The child's social skill can be developed, communication skills can be built and behaviour can be modified. And there's support available for parents now in Nigeria so that these parents and their children with the support of other parents and professionals, can fight the battle against autism. AUTISM does not have to stop a child's destiny.

For more information, you can join the Nigerian Autism community through Nigerians for Autism on Facebook. There is also a parent group in Nigeria called Parents Against Autism Initiative (PAAI). I also always tell parents that "google is your friend". The internet affords you the opportunity to get any information you may be seeking and find support in the international community. 

That's it folks. April is Autism Month,so this blog should be busy. I hope to share stories of parents that have had to deal with Autism in their kids. There will be a book review (you don't want to miss that) and so much more. Please follow me on twitter @adelolaonautism and like my Facebook page Autism Gist with Adelola. I'm sure you will learn a lot this month about autism.

And please read, comment and share o. Let's get this word out people.

Much love from me to you this Autism season... muah

How Can Others Be Involved

The challenges of having a child with ASD or a child with special needs can be overwhelming for parents. The challenges may be peculiar to each parent, but one thing that is constant is the need for support. Parents of children with special needs are seeking for care and support. They need to know that they have friends and family members that have their back. So let’s talk about how we can help.

·         You can go and help out in the house whenever you can. I know some mothers will appreciate some help in the house. It does not mean they cannot take care of their homes, it is just your way of showing that you are there and you care.

·         You can take all the children or maybe just the other children out sometimes. They are often stressed out raising that child and their other children. Siblings of children on the spectrum also deserve a beautiful childhood, and you will be contributing to that experience for them.

·         Go and babysit the children so that the parents can have sometime alone. Raising a child with autism is demanding and so some parents do not have time for each other and this has caused the break up of some marriages. Even couples that have neuro-typical kids feel the need for a break, how much more a couple dealing with their child’s disorder. I am very sure they will appreciate the gesture and labour of love.

·         Encourage them with your words. A call can bring comfort sometimes.

·         You can also give money when necessary. Therapy costs money and so some parents and caregivers will appreciate financial support.

·         It will be nice to have your children go over to their house to play. This will help to build d child’s social skill.

·         Helping them with new information can be very helpful. If you have any news that will benefit them, please share it with them.

·         Stand up for them and their child when people speak ill or rudely of them. People are very mean to children with autism and their parents. We need more people standing up for them.

·         Show them and the child love and care.

·         Be an autism advocate. There is a Disability bill in the House of Representatives in Nigeria. You can join your voice with ours to ensure that it is passed.

·         Most importantly, pray for them and their children. The place of prayer cannot be overemphasised. We are sometimes limited as humans, but prayer allows us to invite divine intervention or help where our own strength cannot help. Sometime ago, a boy at the centre I work now, needed to do eye surgery to remove cataract from his eyes. His parents did not have the money and we could not help either. We just kept praying to God to send help. And God miraculously provided the money for the surgery. Your prayer can also be for God’s comfort for the family. Whatever you pray for does not matter, but please pray for them.

Some people do not have relatives or friends with children on the spectrum, but they can also be involved. You can give to organizations that cater for these children. Another way to help is to spread the awareness. You have no idea how mentioning autism somewhere will help someone who needs to hear about it. School owners can also decide to provide education for these children. Every child has a right to education including children living with autism.

Also I believe that with your help, an adult with autism may be saved from discrimination, and allowed to get a job in a work place of his/her choice.

Thank you for listening. Till our gist continues next time... muah

p.s: In another news, GTB is organizing an Autism awareness seminar and Behaviour Clinic later in the month. The Behaviour Clinic will hold from March 24-28, while the Autism seminar will hold on the 31st of March and 1st of April, all in Lagos. Check out http://www.gtbank.com/autism to learn more and register for it.

Signs To Watch Out For And What To Do

When people ask me if there’s a particular look with which one can identify a child on the autism spectrum, I just tell them “NO”. In fact, I sometimes say that if there was any look for autism, then it will be called “CUTE”. I have worked with quite a number of children on the spectrum and I can testify that they are cute. I’m sure that if you have met any child with autism, you will agree with me. But we can’t assume that every cute child has autism. It will be amusing to see people looking at every cute child as having autism. lol.

So what then should we look out for? And what should we do if we suspect that a child is on the autism spectrum?

As a child grows, there are certain gestures that one should expect. They are communication, social, and cognitive development milestones. For some children with autism that show symptoms early, parents have eventually found out that these children did not show the expected gesture with each milestone. So the early signs to watch out for include;

·         No big smiles or other warm, joyful expressions by 6 months

·         No back and forth sharing of sounds, smiles or other facial expressions by 9 months

·         No babbling by 12 months

·         No back and forth gestures, such as pointing, showing, reaching or waving by 12 months

·         No words by 16 months

·         No 2-word meaningful phrases (without imitating or repeating) by 24 months

But some children do not delay in development, but lose acquired skill any time before age three. Therefore any loss of speech, babbling or social skills at any age before age three may suggest autism.

As the child grows certain symptoms or signs become more obvious. So other signs to watch out for include;

·         When a child does not play with peers, but will rather play with self

·         When a child does not give eye contact

·         When a child does not respond to name or you suspect that the child is deaf by 12 months

·         When a child is hyperactive and still does not play with peers

·         When a child will rather draw your hand to his need than point to it or tell you verbally

·         When a child displays ritualistic or obsessive behaviour (e.g. arranging things in order, opening and closing of doors etc)

As a parent, if you read this article and you suspect that your child may be on the autism spectrum, maybe your child shows some of these symptoms, what should you do?

1.      Speak to a doctor about your fears. We established in the previous article the importance of getting a doctor’s diagnosis. You don’t want to address the wrong disorder, so please, it is VERY important that you talk to your doctor (especially a paediatrician) about your fears.

2.      Get online to browse on any new information on autism that can help you or the doctor. In Nigeria, we have heard of some children that were diagnosed late because the doctor concluded that it was “late development” and the mothers just stopped there. Please o, Google is your friend. Going online will arm you with information that will help you and the doctor.

3.      Get therapy for your child. Even if the child does not have autism, the signs have to be addressed. A therapist addresses the symptoms. Knowing the exact condition helps the therapist to tailor the therapy to address the particular condition. But while you wait for the doctor’s report, please get the right therapy for your child. The different interventions/therapy may include Applied Behaviour Analysis (ABA), Speech therapy, Behaviour modification, Physical/Occupational Therapy, Sensory Integration, Autism Spectrum Adaptive Program (ASAP), Biomedical (which can include change of diet, medication etc). The therapist or support worker will tell you the particular treatment that is applicable to your child or that he/she offers. In Nigeria, there are Special schools or centres in different parts of the nation that provide special education for children living with autism. Some Mainstream/Regular schools also provide special education for children with autism. So you can decide what kind of service you want for your child, and go for it. There will be another article on what you should look out for when putting your child in a regular school.

4.      Find support! This is very important. You can’t handle this alone. There are other parents that have been where you are and they will willingly, gladly and lovingly support you. There is a Facebook group called “Nigerians for Autism”, there are parents and professionals there that can provide support for you. There is also a parents’ support group in Nigeria called Parents Against Autism Initiative. If you send me an email (adelolaedema@gmail.com), I can link you up with them.

5.      Pray for your child and yourself. Prayer is very good, but it loses its essence when people pray only, without finding professional help for their child. While you are praying, please do the other things that have been suggested above. May God help you.

With all my love, I wish you all the best... Muah

Autism is not... (Cont)

Sometime in 2012, I heard about a girl whom they claimed had autism. They described the symptoms and I didn't think it was autism. I asked them a couple of questions and by the time they answered, I knew it could not be autism. Eventually, I asked the mom what the doctor told her, and she told me the doctor said her child had “microcephaly”. Why then was she claiming autism? She said she was told by other people that it was autism. That brings us to another gist of what “autism is not”.

There are other special needs conditions that can affect a child. Autism affects the child’s social skill, communication skill and behaviour. These three domains have to be affected. And you cannot just conclude that a child has autism because everybody is talking about autism. So let’s continue by saying, Autism is not...

Microcephaly: I’ll start with this as it’s in our introduction. Microcephaly is a medical condition which the circumference of the individual’s head is smaller than normal because the brain has not developed properly or has stopped growing. It can be present at birth or it may develop in the first few years of life. It is often caused by genetic abnormalities that interfere with the growth of the cerebral cortex during the early months of foetal development. Abuse of drugs and alcohol, toxic chemicals, viral infections or untreated Phenylketonuria (PKU) are other causes of Microcephaly. Symptoms include intellectual disability and development delays.

A typical brain and the brain of a person with Microcephaly

Down syndrome (DS): DS unlike autism, shows on the face of the individual. It is also called Trisonomy 21 because it is caused by the presence of a third copy of chromosome 21. A child with Down syndrome experiences both physical and mental developmental delays. DS symptoms include smaller overall stature, flat facial profile, thick epicanthal folds in the corners of their eyes, protruding tongues, which is due to their smaller oral cavity and muscle hypotonia - low muscle tone.

Attention Deficit Hyperactivity Disorder (ADHD): Although it is possible to find some children with autism that also have ADHD, it is a completely different disorder. As the name implies, a child with ADHD is inattentive and hyperactive. The symptoms of ADHD can be seen generally in children, but it may become a source of concern when these behaviours occur too often. Because a child with ADHD often finds it difficult to sustain attention during tasks or play and does not often follow through on instructions, school work and other activities, it serves as a major challenge in academics. A parent that is concerned should seek a doctor’s diagnosis. The school too may advice the parent to see a doctor, but they should not just treat the child as naughty.

Fragile X Syndrome: Fragile X is the most common inherited form of intellectual disability. This is a genetic condition which involves changes in part of the X chromosome. I believe we remember, at least faintly, X chromosome from our high school Biology. Do you remember XX for women and XY for men? X and Y chromosomes are referred to as sex chromosomes. The mother donates the X chromosome to all her kids (that is what she has to give anyway) and the father donates the X chromosome to his daughter and Y chromosome to his son. So Fragile X is caused by a fragile site on the end of the X chromosome which appears to be breaking, although not quite separated. It is more common in males than females. As earlier said, it causes intellectual disability in the individual. An individual with Fragile X may also show symptoms of autism. Unlike the usual ASD, there are certain physical features that accompany Fragile X. These may include a long narrow face, prominent ears, high palate, flat feet, and soft velvety skin. They have low muscle tone which may make them seem cross-eyed, and with slack facial features. Some older males may have large testicles. They may also show symptoms of ADHD. For a child who is suspected to have autism, it is good to test for Fragile X, so that the right treatment can be administered.

Intellectual Disability: A person is said to have intellectual disability (ID) when the person shows limitations in intellectual functioning and adaptive behaviours. It is characterized by a below average intelligence or mental ability and a lack of skills necessary for day-to-day living. Symptoms include poor memory skill, delayed language development, inability to connect actions with consequences and may experience difficulty in mastering basic skills like toilet training, feeding, bathing or dressing. Children with different disorders like autism, Down syndrome, microcephaly, fragile X etc, may show intellectual disability, depending on the severity of the disorder. There is no known cause for ID except in a few cases (just about a third of the diagnosed people).

Finally, there are other Pervasive Developmental Disorders (PDD), Rett syndrome (RS) and Childhood Disintegrative Disorder (CDD). Although these are Pervasive Developmental Disorders, they are not classified under ASD because they present different symptoms. Rett syndrome is characterized by normal early development, followed by loss hand skills, distinctive hand movement, deceleration of head growth, gait abnormalities, seizures, and mental retardation. The child loses many skills that have been acquired initially, including speech. RS is found in girls. CDD on the other hand can be found in both boys and girls. It is characterized by a normal early development, usually between ages two and four, followed by a regression and loss of skills such as receptive and expressive language, social skills or adaptive behaviour, bowel or bladder control, ability to play and motor skills. This regression can span from age two to ten and it can be so dramatic that the child notices the changes and comments on it. The child eventually shows symptoms similar to typical autism.

There are many other possible disorders that affect people other than autism. Therefore, the purpose of this article is for people to seek diagnosis from a registered doctor in a registered hospital when they notice the difference in their children. Do not conclude that a child has a disorder because other people say so. Autism is not a name for all developmental disorders or any disorder you don’t understand. A diagnosis is important so that one can know the right treatment to administer. How can you treat what you don’t know? Children with different disorders can get help. But how can the child get the right help if you only assume the problem? Please let’s do the right thing.

Thanks for reading my gist. Till we talk next time.... muah

Autism is not...

A couple of years ago, a six year old boy was brought to the special needs education centre where I worked at the time, for assessment. His teacher had told his parents that he had autism because he was stubborn. Our centre was recommended to them, so we had to do the assessment. And then lecture them on what autism really is.

We have talked previously on what autism is, let’s talk now on what autism is not.

Autism is NOT imbecility: Some people consider children with autism as imbeciles. Originally, the word imbecile is used to describe anybody with an IQ below 50 and above 20. These set of individuals are considered as ineducable. Children with autism are educable and they are not stupid, so cannot be referred to as imbeciles.

Autism is NOT a disorder for children of rich people: Some people consider autism as a social disorder. Many times when I meet people and I mention that I work with children living with autism, they say that “there’s money in your work na. Their parents are rich”. Some even argue with me when I try to educate them. Be INFORMED! Autism has absolutely nothing to do with the social status of the parents. Children with autism are found in rich, middle class and poor families. They are born in urban areas and rural areas. Autism is no respecter of social status.

Autism is NOT as a result of bad parenting: It’s always painful to see or hear people talk negatively about parents of children with special needs. Some parents face stigmatization because they have a child with special needs. Please people, they didn’t ask for a special needs child. They need your love and support. Autism is not a result of bad or poor parenting. The parents have no blame in the condition of their child. They have had to learn to accept and love their child and provide the support the child needs. We should support them too. 

Autism is NOT a curse: One reason some Nigerian parents don’t find help early for their child with autism is that they spend years taking the child from one prayer house to another, because they think it is a curse or something of that nature. Please, autism is not a curse. Nobody is “doing” the child. It is a disorder and that is all that there is to it. I am not against praying for the child, but you need to ensure that the child gets the right help. Two scriptures from the Bible ring in my heart now. One is that faith without works is dead, so parents should put their faith to work and get help for the child. The other scripture says that we do not receive answers to our prayers because we pray outside God’s will. Praying against a curse where there’s no curse seems like praying amiss to me.

Autism is NOT the consequence for witchcraft: Some people also accuse parents of children with autism of witchcraft or occultism. Why na? Must we spiritualise everything? Like I said earlier, it is not the parents fault. Also nobody is doing the child.

Autism is NOT a name for naughty children: Like the case in my introduction, some teachers or people think that autism is a name or title for children that are naughty. There’s no correlation, abeg. It is not a name or title for naughty children. We have talked about what autism is in a previous article. You will do well to check it out.

Autism does NOT define the child: Many times we limit children with autism or any other form of special needs because we define them by the disorder. Yes we need to be patient with them, love them and let them move at their pace, but that does not mean we should limit them because of the disorder. These children are seeking to express themselves, we should let them. We should seek for the help that they need so as to be independent. We should not raise them to be helpless, because we are trying to be understanding. Also I have to say that we do not refer to a person with autism as “AUTISTIC”. Rather the appropriate thing to say is “a person (living) with autism” or “a person on the autism spectrum”.

Autism is NOT the end of the world: One major reason for autism awareness is to give hope to parents of children on the autism spectrum. The fact that a child has autism does not stop the child’s future. That is why there are professionals that provide therapy for children with autism. They are there to care for the child and help the child attain maximum independence.

Much love from me to you in this valentine season...muah

Autism... Hmmmnn (Cont)

We are still on the introduction to autism. From the last article, we have been told that autism affects communication, social skill and behaviour; but how exactly? How can we tell that a child has autism? Let’s get into that...

Many parents of children living with autism have said that they started wondering if something was wrong with their child when he/she did not talk on time or maybe the child was even talking initially and lost speech. Delayed speech or loss of speech often times serves as the red flag which points a parent’s attention to the difference between the child and other children his/her age. Basically, people with autism have challenges with verbal or non-verbal communication. It is said that words make only about 7% of communication. Tone and body language are said to make up the rest of the 93%. A child with autism has challenges reading the tone of communication, gesture or facial expressions and even understanding the words spoken to him/her. A person with autism may find it difficult to participate in a conversation, even if he/she has speech. There are other communication challenges. For example, echolalia (repeating what others say) is a common behaviour among children with autism. Also children with autism will rather take a person’s hand to what they want instead of pointing to it. The child may look at a pointed finger or hand and not the object being pointed at. The communication challenges experienced by individuals living with autism have been described as a man being in a strange land, where the people speak a different language. It’s not his fault that he does not understand what the people are saying.
 A person living with autism also has challenges in social interactions. It’s common to find a child with autism staying apart from other children or not playing with the other kids around. They often seem to avoid interaction with others. They are often indifferent or unaware of the people around. A child with autism will most likely avoid eye contact and may not return a smile, when smiled at. Children with autism do not understand social norms or unstated social laws. So a child with autism may not understand the need for personal space by others and so may stand too close to others or approach another person spontaneously. They do not understand turn-taking or the need to share, so a child with autism may not share toys with other children.
People with autism show different odd behaviours. And these behaviours differ for different people on the spectrum, but they are repetitive. Hand flapping, jumping, body rocking or head rolling are common behaviours found in children living with autism. Some children with autism may appear to be obsessed with stacking objects or arranging objects in a line. Many children with autism are resistant to change. They may want to follow a daily routine or a particular dressing ritual. For example, if a child is used to wearing his right shoe first, he may strongly refuse to wear the left first. Some may insist that the furniture be kept where it is or may refuse to stop an activity until they are done with that activity. Also some children with autism may focus on an activity or object of interest, such as a toy, game, a TV program or even a subject of interest. A child may be so interested only in dinosaurs, a particular animal, science, mathematics, literature, music, any possible subject. Other odd behaviours may include toe walking, poor muscle tone, or poor motor planning. A child may show unusual eating behaviours; some are selective in choice of foods, or may refuse to eat. Also some children with autism may be very sensitive to sounds or what they see or may seem insensitive. It’s common to find some children with autism covering their ears as a result of their high sensitivity to sounds. Some children with autism are not afraid of danger and may show high pain threshold. They may also show some injurious behaviours such as hand biting, head banging, eye poking, and skin biting. According to Wikipedia, in 2007, there was a report that injurious behaviour occurred in about 30% of children on the spectrum. Children with autism also have challenges with pretend play or imagination. So the child may not be able to pretend that a doll is a baby or that there’s someone on the other end of the line when given a toy or inactive phone.

In another article, we will discuss the early signs of autism in children. But watch this space for more info on autism... Thank you for reading.