December, 2016

When The Diagnosis Comes

"Mum, dad, have you noticed that your kid is slightly different from other children…"
Previous articles

Embracing our cheery lively baby after the arduous nine-month journey of pregnancy, we just wish he could grow up healthy and happy. The reminder of "slightly different" from school teacher or nurse at health centre, however, rains on our parade and chills us to the core – what is going on with my child?

With butterflies in our stomachs, we finally grab our child's tiny hand in ours and take him to assessment. On receiving the report, incomprehensible words and alien jargon strike us with tears of panic and frustration like terrifying monsters – is the future of the child doomed?

"Do you still remember your report card in Primary Two? How important is it to you now? We have so many report cards along the course of our lives – this assessment is only one of them and there is no need to see it as the end of the world." Dr. Lucia Tsang, Clinical Psychologist of the Department of Health who is involved in the assessment, always uses this analogy to give hope to parents in despair.

Many experienced parents rather consider the assessment report as a kind reminder that helps to identify the strengths and weaknesses of the child and better prepare this obstacle race together.

Part I

Assessment Summary –The Starting Point of the Obstacle Race

Children with developmental or behavioural disorders will be referred to a Child Assessment Centre (CAC) of the Department of Health by a Maternal and Child Health Centre or a private doctor for assessment and this is where the whole obstacle race starts.

After around two hours of assessment, parents will receive an assessment summary that tells various developmental conditions of their child. Some of the terms in the summary may be unheard of and, not unexpectedly, incomprehensible to parents. For this reason, we have invited Paediatrician Dr. Lam Lai Na, Clinical Psychologist of the CAC Dr. Lucia Tsang and private Speech Therapist Connie K.W. Yam to shed light on the reading of the report.

Every child is unique and therefore so is every assessment report. The sample assessment summary below nonetheless includes most of the key points of the assessment.

True acceptance builds on understanding – let us start by learning to read this assessment summary.

Ha Kwai Chung Child Assessment Centre

Assessment summary (For Parents and Schools)

Assessment Date ___________

Pediatrician / Clinical Psychologist _________

Developmental Assessment Summary:

Age ___
Age-appropriate
Delay
Around ___
Age-appropriate
Delay
Around ___
Gross Motor Performance
Age-appropriate
Delay
Around ___
Fine Motor Performance
Age-appropriate
Delay
Around ___
Hearing
Normal
Weak ___
need hearing aid
Vision
Normal
Weak ___
Visual Impairment
Others
Services / Trainings Referral
Early Education and Training Centre
Integrated Programme in Kindergarten-cum-Child Care Centre
Special Child Care Centre
Special School
Education and Support Services
Speech Therapy Service
Audiological Service
Paediatrician
Clinical Psychologist
Medical Social Worker
Audiologist
Optometrist
Speech Therapist
Physiotherapist
Occupational Therapist
Follow-up with phone call or questionnaire
referrals to Specialist Out-patient Services of Hospital Authority for specialist consultation and follow-up. Paediatrics / Child Psychiatry / Eye / Ear, Nose, Throat / Physiotherapy / Occupational Therapy / Speech Therapy / Neurosurgery / Nutrition / Clinical Genetic Service / Orthopaedics / Surgery / Prosthetic and Orthotic
Family Service
Others
Training program offered by CAC
Developmental Training Program: Parents Training Program
Parents Workshop
Parenting Program
Others
Follow up by Maternal and Child Health Centres, Department of Health
Developmental Surveillance Scheme
Preschool Vision Screening
Triple P Program
Introduction of Community Resources
No Follow-up is needed
No Referral is needed

Cognitive Performance (Intellectual Age)

The word “age” is no stranger to us, but what is “intellectual age”? Intellectual age mainly refers to cognitive abilities, including any mental activity pertinent to learning, thinking or problem-solving and basic learning ability of a child. Assessor employs assessment tool that matches the needs of the individual child for evaluation. Upon comparing with the standard sample, the test result can then determine the age range of the cognitive abilities of the child.

Verbal Comprehension

Is it true that children with good speech fluency must indicate no problem in their language development? Not necessarily. Verbal comprehension is only one of the many components of language development. Can the child understand one's speech? Can he/she understand verbal commands and different questions? Or does he/she merely repeat words of others like a parrot (echolalia)? Children with receptive language difficulties may only understand partially, due to the difficulties in different types of questions, use of lexicon, length of sentences, complexity of sentence structure, etc, may lead to misunderstanding or even communication breakdown.

Verbal Expression

Children who are presented with limited or inappropriate use of vocabularies, weak grammatical rules and language organization, will encounter difficulties in verbal expression. Examiner will focus on the assessment of the use of vocabulary and syntax of a younger child. For instance, if a two-and-a-half-year-old child can only express in single words like "ball, mum, street or biscuits", he/she may be slightly lagging behind children of the same age. For an older child, organization of language will also be focused. For instance, whether or not he/she can use story grammar (time, place, character, initiative event, attempts, plan, consequence, internal response, reaction) to tell a story or describe an event. The examiner will also observe and evaluate whether the child can perform different communicative functions, namely request, rejection, commenting, etc.

Age-appropriate or lagging behind same-age peers

“Child development” is a continuous process that follows a specific sequence with certain developmental milestones. Under the influence of genes, environment, growth, and learning, the development of a child varies from individual to individual.

In complementary to the standardised assessment tool and checklist of child development, the development assessment combines information from parents and school with clinical observations of the assessor to understand the capability of different developmental domains of a child.

“Age-appropriate” means that the developmental capabilities of the child are similar to that of children of the same age. “Delay” means the development of a certain domain of the child is slower than that of children of the same age.

“Developmental delay” means that the child is substantially below the average expectations of children of the same age across all domains of development. The multi-disciplinary team of doctors, clinical psychologists and speech therapists endeavour to identify the causes, provide suggestions on home-based training, and arrange suitable therapy, training and educational support service, so as to help the child to develop potentials and alleviate delays. Children with developmental delay are able to achieve constant improvements in general.

Suspected Autistic Features

Suspected? Does it mean yes or no? It is possibly the most confusing part for parents.

According to the criteria set by the American Psychiatric Association (APA), the diagnosis of disorder requires the presence of certain conditions. Autism, for instance, is generally reflected in domains in which the daily life of a child is hindered, including language development, social communication, rigid behaviour, and narrow interest. “Suspected autistic features” means the child possesses certain behaviours and features that are similar to those with autism, yet the number or severity of the features is not sufficient to support a diagnosis of autism.

In order to determine a diagnosis, paediatrician or clinical psychologist endeavours to acquire information from the child during the assessment process and study reports and descriptions from school and parents. However, information may contain inconsistencies sometimes.

For instance, a child is obviously not keen on communication and makes no eye contact with the assessor during the two-hour assessment; his parent, on the other hand, claims that the child is willing to interact with others in everyday life, but is a bit shy with a stranger in a new environment. In this case, the assessor may mark “suspected autism spectrum disorder” (since 2014, individual organisations in Hong Kong have adopted the revision by the APA, in which autistic disorder, Asperger syndrome, high-functioning autism and other subcategories fall under the umbrella of autism spectrum) on the report. It is because when the child appears to show, based on observations in the assessment, certain characteristics that match those of the autism spectrum, parents can pay more attention in everyday life or receive some early training.

There are also cases where the behaviour of the child is related to external factors like parenting or environment – being pampered and cosseted by family may cause rigid behaviour, for instance. The diagnosis cannot be determined until longer observation. “Suspected autism spectrum disorder” reminds parents to confront themselves with the rigid behaviours of the child and avoid compromising even when it does not seem to be a “big deal”. Otherwise, the small things of the present moment may bring more and larger obstacles to the future path of growth.

Similar cases can also be seen in the diagnosis of attention deficit / hyperactivity disorder (AD/HD). According to the guidelines of the APA manual, the diagnosis of AD/HD must be based on observations across time and across settings, meaning the diagnosis of AD/HD cannot solely rely on observations drawn from a single setting or time slot. In some cases, parent may complain that his/her child can never sit still but the child is rooted to the chair when meeting the doctor in the assessment centre. The child may be marked as “suspected attention deficit” on the assessment report, which requires follow-up.

Central Referral System for Pre-school Rehabilitation Services

Meeting with medical social worker will be arranged for parents after the assessment of their preschool child. The social worker will then refer the child to one of the services funded by the Social Welfare Department, namely the Early Education and Training Centre (EETC), Integrated Programme in Kindergarten-cum-Child Care Centre (IP) or Special Child Care Centre (SCCC).

SCCC provides whole-day professional intensive training and care for five days a week. IP resembles "integrated education" in primary school. In additional to typical classes, children who are admitted to a kindergarten-cum-child care centre will attend in-depth training (in groups or individually) conducted by special child care workers and speech therapy sessions offered by the district-based speech therapy team. EETC is akin to after-school tutorial class as it offers one to two training sessions every week. Counselling and support sessions for parents are also organised to ensure children can receive suitable training under proper parental guidance. Furthermore, to support children on the waiting list of the services as early as possible, the Social Welfare Department launched the two-year Pilot Scheme on On-site Pre-school Rehabilitation Services in late 2015. Speech therapists, occupational therapists, social workers and other professionals conduct on-site individual and group training in nurseries and kindergartens on the scheme.

Social worker generally makes referrals in accordance with the severity of the developmental disorder of the child. More severe ones are referred to SCCC and milder ones are suggested to apply for IP or EETC. Family background is also taken into account for referral decision nonetheless. For example, as EETC expects parent to accompany the child to attend training and acquire the skills to continue training at home, if the child’s carers are not suitable to play such role, he/ she may be referred to IP, instead of EETC.

Some parents may be worried about labeling and prefer to be referred to IP instead of SCCC. While the final decision of the parent will be respected, social worker will provide counseling to help parents understand that training and education are best chosen according to the developmental stage and needs of the child, which will facilitate optimal outcome in the future.

Special Education Services of the Education Bureau

For children who have taken the assessment, the assessor of the Department of Health must obtain consent and signature from the parent before submitting the report to the Education Bureau. Otherwise, the report shall not be distributed or transferred due to the personal data it contains. The Education Bureau has been promoting the Whole School Approach to integrated education in schools. Upon receiving the assessment report from the Education Bureau, the school will arrange suitable school-based support services in respect of the condition of the child.

As for children who are assessed before attending any primary school, the Department of Health will post a follow-up survey to his/her teacher and parents in due course. If need be, a pre-primary one assessment will be arranged prior to further follow-up.

Our centre will follow up with your child’s development

Apart from educational referral, referral for therapy and training will be offered after assessment. Different specialists focus on different developmental domains of the child and tailor treatment plans to minimise the impact of the diagnosed developmental disorder on the child. Speech therapist, for instance, helps the child to enhance his/her verbal comprehension and expression ability and, on the other hand, occupational therapist focuses on the hand-eye coordination and fine motor development of the child.

It is noteworthy that the training time of the child is, in fact, the best time for parents to charge themselves up. Taking the opportunity to know people with similar experiences and develop a support network can certainly smooth out the path ahead.

Part II

Blessing or Curse?Preparing Yourself for the Report

"There was no such written assessment summary a decade ago."

Dr. Lucia Tsang, Clinical Psychologist of the Department of Health, reveals the origin of the assessment summary.

"Visit to the assessment centre was seldom delightful. Understandably, parents found the report hard to accept at the very instant. The purpose of the assessment nevertheless aimed at allowing parents to understand the ability of the child objectively and identify his/her strengths to make up for the problems. Sadly, parents usually refused all other information after learning about the problems of the child. As a result, follow-up was hardly possible because they could not recall whoever they have met, let alone details of the report. Roughly around a decade ago, we decided to prepare an assessment summary, with the name of the assessor clearly indicated on it, for parents to take home and digest in their own time."

Why is my child different?

All of us have our own strengths and so are children with developmental disorders - a message that Dr. Lucia Tsang endeavours to get across to parents over all these years of work for the CAS. However, not all adults know how to appreciate their child. As Dr. Lucia Tsang recounted, a mother, who kept shaking her head vigorously in the centre, said that she could not find any merits of her child. The kid was deemed worthless in the eyes of his mother.

Dr. Lucia Tsang talked to that mother patiently, "True, it may be hard to see the merits of your child if you set your expectations too high. Oh! But he knows how to care for you. When you do not feel well, he will try to lower his voice so as not to disturb you from rest. Can you see this kind of merits?"

Still, a lot of parents wonder — even when I can see that, why is my child different? 

"Parents who have come to us love to ask why — why is my son like this? I usually answer by questioning back — why don't you ask me about his normal intelligence? Why does he have photographic memory? And why is he so good at building toy blocks?"

Dr. Lucia Tsang says that most parents cannot help but crack up at her questions. "We incline to take the merits of our child for granted and focus only on his/her deficiencies."

Triumph only comes with acceptance

As observed by Dr. Lam Lai Na, Paediatrician of the CAC, the fact that parents do not understand why their child is different makes them suffer the most. Doctor or clinical psychologist therefore explains to them the symptoms that cause their kids' behaviours.

"Parents find it very important to know that the abnormality of the child is accountable. Only understanding can breed empathy and forbearance. A more relaxed relationship between the parent and the child is instrumental to a series of therapy and training sessions to come."

Dr. Chan Kwok Ling, Head of Child and Adolescent Psychiatry of Queen Mary Hospital, has met many parents of SEN children. Alongside the treatment for children, she has also been trying to influence their parents. 

"Treating children is not difficult but it is not always easy to ask for support from parents. In a number of AD/HD cases I have seen, parents refuse their child from therapy and that lead to the eventual disintegration of self-confidence of the child, who is constantly told off by teachers in class. The child may even refuse to attend school after primary education and start to give up... If developmental disorder is a block obstructing the path, why not get it out of the way as early as possible to make it easier for the kid?"

Based on Dr. Chan Kwok Ling years of observations, children who are least affected by symptoms and have the best development are always empowered by a parent capable of accepting and fighting for resources for the child. "Parents who are reluctant to accept reality or ashamed of talking about the disorder of the child can never win the battle."

This is NOT the end of the world

Dr. Lucia Tsang loves to quote research studies on SEN children to parents. Many overseas longitudinal studies explore factors that generate the most impact on the child's development. Dr. Lucia Tsang summarises, "The intelligence of the child comes first. A child with higher IQ is more likely to find ways to overcome his/her own obstacles. Acceptance from parents and family situation rank the second. The child is less affected by the developmental disorder when his/her parents can truly accept the limitations of the child and are eager to rally family support to brave this path together. The third is the availability of suitable therapy and training."

In other words, do not allow the dark cloud to loom over for too long – bring your family together to disperse it for a brighter future for your child.

"Parents should never consider the assessment as end of story. This is just a beginning for us to understand objectively the ability of the child. I ask parents sometimes, ‘Do you still remember your school report card in Primary Two? How important is it to you now? We have so many report cards along the course of our lives and this assessment is only one of them – so no need to see it as the end of the world and overwhelm yourself with catastrophic thoughts. We need a calm and clear mind to help our child through this race," says Dr. Lucia Tsang.

In this light, whenever a worried parent asks, "What about my child's future?" Dr. Lucia Tsang would always reply, "The future of your child lies in your hands today."

Part III

Don't stand alone:Bring the Assessment Summary Home

Three-year-old Hugo was not very talkative but he was so smart and lovely that others were drawn to him naturally. When his mum and dad were interviewed on the sofa, he could not stop hopping up and down like a little monkey. Hugo was diagnosed as developmental delay and his verbal comprehension was one year behind that of children of the same age. Once felt very useless and weak, his mum Maggie even lacked the energy to pick up his hand and take him out. An unspoken worry clouded his family – was the child doomed to be stupid?

"My son was inside me for ten months and I would take the blame for whatever happened to him. I cried to myself the moment I received the assessment, 'Damn! I must have done something wrong when I was pregnant with him or was my parenting too laid-back or not useful at all?'"

Even up until today, Maggie's eyes rim bright red from crying when she recalls. Perhaps only mothers can understand that feeling of guilt.

Fortunately, there is someone to stand by her side and calm her down at all times. Sam, her husband, is always there to soothe her nerves whenever she starts blaming herself. "I always comfort her that every child is unique. Some children learn faster and some slower – not everyone can be equally smart."

Hugo is closest to his father. Sam understands his son's developmental delay in his own way. "In our days, you were labelled as poor comprehension if you could not keep up with the progress of the class, but it was not such a big deal in the end. Take dictation, for example. You may fail the first two times, but you can surely make it after the tenth attempt, as long as you keep trying. As a man, you need to remain composed, or else your other half will be more vulnerable to fear than you are. Stay calm and figure out a solution together – even the biggest problem can always be solved."

No wonder Hugo's family was not stricken by the assessment summary, but found comfort from it instead.

Maggie says with a smile, "Thanks to the assessment – we finally know why Hugo is not as talkative as others and can stop worrying about it. Subsequent speech therapy sessions allow me to understand that Hugo is not stupid or dull – just that he may not grasp the meaning of the vocabulary. He has improved significantly since we start talking to him more often every day. One day, I felt down for no reason and Hugo suddenly came to embrace me and said, ‘I love you, mum!' At that very instant, my whole being melt in joy and none of my hardships mattered anymore."

A paper that weighs more than a marriage certificate

"Do you know the meaning of the word family? It stands for father, mother, i love you. This assessment summary adds a new page to our family. It also weighs more than a marriage certificate because it can test how much two people love each other and devote to the family," says Hester, mother of an autistic girl.

Her daughter Ariea, now 19 years of age, is skilled in cooking, photography, calligraphy, and even oracle bone writing. Her writings and paintings have won a number of awards. This family of three has been running the obstacle race for nearly two decades and Ariea would not have achieved so much if it was not for love.

"Ariea did not talk at all and was very stubborn when she was small. She was cranky all day long and often threw herself to the ground, flung around like a headless chicken, and bawled at the top of her lungs. Her social skills were worse than her already pathetic cognitive ability. Those were, as we learnt later, all typical symptoms of autism."

After shedding streams of tears, they had to pick either one of the two divergent paths – one was to carry on and the other was to give up. Hester describes, "The second option was out of the question. All we could do was to bite the bullet and keep walking with her."

The most petrifying moment is still fresh in her mind. "It was really depressing. We planned on having a nice holiday together by taking Ariea on a cruise, but she was screaming to jump into the sea. We had to wrestle with her to drag her back."

While they grew accustomed to public attention, they were gravely upset by some unexpected advices. "Ariea was diagnosed at one and a half years old. We met a speech therapist when we were on the waiting list of SCCC. To our surprise, she suggested Ariea to use a 'communication book'. Ariea just had to hand me a card with 'rice' written on it whenever she wanted food."

The therapist also claimed that Ariea could never communicate with others verbally and hinted her parents to stop their fruitless efforts. Enraged and anguished, they refused to accept these presumptions and offered more intensive training to Ariea. As a result, Ariea had learnt how to speak and write before starting primary school.

"The most touching moment for me happened in her Primary Three. One day, when she was home from school, she told me that her classmates snatched the squid snack she had taken to school. I was extremely happy because we had insisted on teaching her speak lest she would not know how to air her feelings to us. It would have been too tough if she could only keep everything to herself. I called her dad right away that day – not because of the snack, but to tell him that our efforts have paid off."

"For that reason, marital relationship plays a very important part. Raising a child is definitely not something that can be done alone. Being diagnosed with autism – so what? We just let her thrive in her domain as best as she can. All of us pursue after health and happiness and Ariea is no exception. As parents, we try hard to input and hope that she can respond with some output one day."

The eldest and the strongest backing

In some families, parents have to handle the emotions of four senior family members – the child's grandparents.

After knowing that the child is diagnosed with developmental disorder, parents always hesitate to break the news to the elders of the house lest they cannot understand or would rub things up the wrong way.

Moon's bright and cheery mum has always regarded her own mother as her pillar of life nonetheless. Over the years, Moon was suspected of autism spectrum disorder and subsequently attention deficit disorder. Tossed and turned by waves of challenges, Moon's mum almost lost her direction. Luckily, her own mum's words have always been her best tranquilizer, which keep her on her feet every time.

"My mum always gives me a pat on my shoulder and tells me not to worry whenever I need support and comfort the most." The allegedly confirmed diagnosis of AD/HD, for example, has almost driven her out of her mind. "First suspected autism and then AD/HD – what exactly could I do?"

Her mum kept a level head and consoled her, "It's alright – the two reports are not consistent with each other. Besides, a lot of children are deficient in attention and we seldom meet a child who can sit still for long. Moon is like a snail that requires more time to grow and you also need to give yourself some time to accept."

Grandma and grandpa were Moon's major caretakers at the time. Knowing Moon's condition, they took her to the park more often to make friends. "When I got home from work, my dad (Moon's grandpa) reported that Moon, albeit a bit intimidated by strangers at first, was willing to play with others eventually. He thought that autism might just be another word for shyness…what he said really helped to put me at ease."

Moon's family slowly regained their peace. They did not only keep an eye on Moon, but were also eager to take her to training and therapy. Moon's swift and significant progress over the course of just few years caught everyone by surprise.

Moon's mum says, "I was very worried that she could not adapt to school life or modern life initially. Autism and attention deficit were a big time mess…no friends, poor understanding of classroom teaching, low self-esteem due to incomprehension and fear of asking questions…who would have thought that Moon would turn out to be a completely different person now? Recently, I heard from her class teacher that Moon has made good friends in school. Not only did Moon enjoy chatting to her classmates, she was also enthusiastic in raising her hand to answer questions!"

How to tell the
elders at home…

Dr. Lucia Tsang, Clinical Psychologist of the CAS of the Department of Health, says that elderly may have difficulty grasping terminologies like attention deficit, autism spectrum, and dyslexia. When you take the report home, you can skip the name of the diagnosis and focus on describing the behavioural characteristics of your child's developmental disorder. For instance, our girl is so energetic that may cause her trouble in school or affect her school life.

"Grandparents tend to pay closer attention to this way of expression because they are eager to put their grandchild right. By doing so, we are more likely to solicit support from the elders and inform them of the things they, as caretakers, need to do more or avoid. A synchronised and consistent model of parenting is significantly instrumental to the therapy and training of the child.

Should I tell my kid…

  • Parents should refer to the comprehension ability of the child and explain to him/her, in simple terms, the need of accepting training.
  • Young child may not need to understand the designation of diagnosis. Parents may describe the behavioural characteristics of the developmental disorder to the child and help the child to understand the challenges ahead.
  • Parents should encourage the child to accept and participate in the therapy or services subsequent to the diagnosis and improve self-care ability .
  • Parents should respond to questions from the child positively or look for information relevant to the disorder with him/her to show support and acceptance.
Source: Department of Health, Hong Kong

Part IV

Letter from a SEN childPlease, will you walk with me?

Foreword: To SEN children, parents are their white cane and, in some cases, the only bond to the world. The 19-year old Ariea Cheng, an autistic girl who was considered as language deficient by her speech therapist, has proven herself to be a good writer and artist. In hopes of rooting for people in the same race, she has especially written a letter to parents.

Ariea's case is not singular – as long as you are willing to walk with your child, he/she can always learn to fly up high one day.

Text: Cheng Kam Sze
Video: Johnny Liu
Photo: Johnny Liu
Illustration: Tina Ko
Translation: Yoyo Chan

Previous articles

Contact Us

If you have any enquiries or suggestions, please fill in the form below and press "Submit", we would respond to you as soon as possible, thank you!