Life with an Autistic Child…
(Date of Interview: 15/09/2013)
Brief Intro: This interview (open-ended questionnaire) was conducted between myself and parent(father) from Trinidad. He has endured the entire experience of being ‘unsure’ , having his child diagnosed and then gathering the tools for raising an autistic child. He has decided to share his experiences for the benefit of others (God Willing). He has also chosen to keep himself and his son’s identities confidential and hopes this will help parents who are also ‘unsure’ about their child, by giving them the encouragement to take the next big steps in diagnosing (via a doctor) and understanding autism.
Azizah: At what age did you realize something was a little different with your child?
Father: At age 2, he seemed to have regressed as he previously said “Mom”, “Da” for Dad and “Hello” when he would pick up cell phones and mimic us. He just completely stopped speaking
Azizah: Did you suspect autism or did someone bring this possibility to your attention?
Father: We did not think autism at all. In fact the pediatrician suggested that it was jut delayed speech, which we accepted for two years, then a family friend (a senior doctor) suggested that we go to the children’s clinic at Mt Hope for them to see my son. The clinic did CAT scans and interviews and found nothing physically abnormal in the brain or otherwise and only when he was put into the Children’s Developmental Clinic did Dr Dick meet and analyze him and suggest that he may have “Pervasive Developmental Disorder- not otherwise specified” based on his behavior and responses.
Azizah:“Were you defensive and/or offended by this suggestion of autism?
Father: We were not offended as we knew that something was not right. We were sad that we did not get a diagnosis earlier, because subsequent to Dr Dick’s diagnosis and her referral to Keisha Lindsay (Speech & Language Pathologist) my son now can speak quite well with minimal prompting. His only issue now is that he is socially a quiet person and that may be because of the years that we did not try to get him help as we followed the pediatrician’s advice of just letting his “delayed speech” go on until he was ready.
Azizah: Do you suspect your child’s autism was caused by or linked to the MMR vaccine?
Azizah: Did you ever mention your suspicions to your pediatrician early on? If so, what did he/she say?
Father: Yes. He thought it might be “delayed speech”
Azizah: Where did you go to officially diagnose your child? What was the process?
Father: We took my son to Mt Hope Children’s Clinic based on the recommendation of a family friend. They did their tests and found nothing physically wrong and sent him to the Children’s Developmental Clinic where he was finally diagnosed (actually it was a pre-diagnosis because they did not do any real tests but rather looked at his behavior only). Last December I took him to a neurophyschologist in Curacao, based on another friends suggestion) who diagnosed him based on tests as “Autism Disorder (DSM-4 code: 299.00)”
Azizah: Upon meeting your child, what ‘tells’ did this person bring to your attention as being the main features/behaviors that caused them to believe your child was autistic?
Father: Dr Dick showed us that he was not keeping eye contact when one-on-one. Also that during a tantrum he seemed to calm down when gently stroked and spoken to in a soft gentle tone of voice. His general neatness of “posing” his toys was also another item that she said was a sign He did not have the hand-flapping though, which is another sign. The neuropsychologist did multiple scientific behavioral tests which he showed us the results, to arrive at his diagnosis.
Azizah: Were you ever torn between whether he had Asperger’s or Autism?
Father: No parent wants to hear that their child is autistic, because society has been trained to think that autism and “retarded” are the same when they are not. Dr Dick was at pains to indicate that the diagnosis that she gave is on the autism spectrum, but is nearer the Aspergers end (minor form of autism) than the “serious” end (major form of autism). As a parent, I made it a point to stress to anyone who asked that “he has a very mild form of autism”. Short answer YES, but I hope my explanation clarifies my position.
Azizah: Was there anything different or complicated about his birth or the pregnancy?
Father: As far as we can tell, his birth was regular. He may have taken a little longer to come “out” and the doctor used a “vacuum pump” to assist in getting him “out”, but nothing seemed seriously at issue.
Azizah: Did your child speak at all while in kindergarten? If so, to what extent and at what speech level?
Father: His speech was generally limited to one word responses of YES or NO or PLEASE or MINE etc. He could tell shapes and colors and letters and numbers too, based on the intervention made with Keisha Lindsay.
Azizah: Did your child interact/play well with other children his age in kindergarten?
Father: He would play with the other children near to him, but not necessarily playing with the other children. Sometimes they would play catch together, but that was generally the depth of his play interaction at kindergarten.
Azizah: Does/Did your child ever express extremes of behaviors/emotions? Like extreme crying or lack of crying, fighting, rages, self-injuring, etc?
Father: In the early times he would have tantrums and throw himself on the ground and scream when he was trying to communicate but we could not understand what he was trying to communicate. Also if he was playing with a toy and his little brother took it from him to play with. In the last two years we have not had any of those behaviors because he can now explain well when he wants something (he says “give me…”) or ask for something (he says “I want…”) or complain about something that someone did to him (he says “…took it from me”. These were all due to the intervention of Keisha Lindsay, who we are eternally grateful to.
Azizah: Did/Does he have any of the classic behaviors of autism? For example, toe-walking, peripheral sight/gazing, grinding teeth, echolalia, twirling, jumping in one place a lot, etc)
Father: No, none of those. Generally, he likes to sing at most times the theme song played at the start of a movie (like the 20th Century Fox theme). It ay not be socially acceptable or be done at a good moment, but that is generally his only issue at the moment in terms of “strange” behaviour
Azizah: Is your child a picky eater?
Father: Yes. He prefers to eat dry things. So plain noodles, plain roti, KFC (without ketchup) and he will only drink Orchard orange juice in the pack OR water (no other kind of juices will be accepted if not from an Orchard pack
Azizah: How do you discipline your child? Do you have any suggestions for other parents regarding the ‘disciplinary methods’ for an autistic child?
Father: Every child is different. I am very firm with him (sometimes tone is rough). When I tell him to do something, he will do it, however he will not always listen to my wife because her tone is not as firm. In the earlier days I would occasionally hit him one lash and I believe that he has that memory. In fact my wife (and my mother-in-law) uses me as the bad guy to him to do things with the threat of “I will call your daddy if you don’t do it”. This may not be the right way, but I realized that being firm in my tone was the only way we got him to do things. I also use my body language to indicate that I am serious.
Azizah: Does your child attend school or do you home-school?
Father: Currently he has just started in a mainstream school as part of cooperation that I have gotten from the principal who is a family friend. Previously he was at a small private school (less than 10 students) for less than two years. There he got individualized attention and his tantrums became under control thanks to the intervention of his teacher, Ms Candace Nicholas at Destiny’s Academy in Trincity.
Azizah: If attending school, does the school make any special provision for your child?
Father: His teacher currently has been very understanding. She has indicated that if he starts singing in class, she will ask him to sing quietly to not disrupt, and he has complied. Also, although he does not always write down the things on the board, she has noticed that he is trying and will write some of it, so it is a work in progress. He takes part in class activities and has been putting up his hand to answer questions in class, so all in all the teacher has been accommodating. His handwriting is his major handicap, it is legible but the penmanship is poor. Sometimes, if he gets bored, he will look outside the classroom, and his teacher has taken him for a short walk on occasion if she sees that he is getting bored. He is 8 years old and was placed in Standard 1.
Azizah: Has he done well in the education system? Also, does he have any particular interests or talents?
Father: Two years ago I had my son enrolled in another school and the teachers of the school did not want him there and made complaints to the principal at staff meetings that they were not trained and dealing with him was outside of their role. He lasted two months as I got fed up and removed him from the school. I had hired a private aide to be with him, and the teachers (and children) accused him of things which the aide had to explain he did not do. He was accused of biting children (which he has never done anywhere else in his history), he was accused of hitting (which he has never done). A child told the teacher that my son had hit another child, and when the child who was hit was asked who hit them, the child explained that the one who blamed my son was the one who actually hit him, but because my son did not say anything, he automatically accepted the blame, until the aide asked the question of the child that was hit. At the time he would have the occasional tantrum, and he was not fully potty trained too. So he probably was not fully ready to be mainstreamed at that time
Azizah: Was he ever held back a grade/class level, because of his autism?
Father: I kept him at kindergarten an extra year. He was never in a real school of the education system long enough to be held back
Azizah: What is his age and personality like now? What do you see for his future?
Father: He is 8 years old and still quiet, but now he will play directly with his peers. He has friends at school and even at the previous mainstream school of two years ago, if the children see him, they will come up to him to say hello and talk to him. He is respectful and does not back talk to anyone. It is too early to say what his future will be, but with his family support, and the open mindedness of his teachers, I think that he has a positive future ahead. He likes to sing and he can read and he likes to take photographs with his camera, and will pose toys to get the best picture. I would like to credit Keisha Lindsay, Candace Nicholas and Dr Dick for assisting in getting him to the position that he is at today along with his family and extended family.