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