Articles on ABA/VB
Protecting children from sexual abuse
Most children will enjoy a happy childhood, full of love, support and opportunities for growth. Relationships with parents, siblings, the extended family and friends will help them develop necessary social skills to fulfill their need to be included in the community and excel with others.
Unfortunately, a few children will be exposed to negative relationships, some of which can be extremely harmful. This document aims to increase awareness of sexually abusive relations and guide parents and professionals on how to create safe environments for children to grow and interact safely.
- Some forms of sexual abuse include having intercourse with a child, touching a child’s genitals for sexual pleasure or producing pornographic images of children.
- 1 in every 10 minors will suffer sexual abuse by the age of 18.
- About 93% of victims suffer sexual abuse by someone known to them or their family.
- About 82% of victims below the age of 18 are girls.
- In 88% of sexual abuse cases, the perpetrator is male.
- Approximately one third of perpetrators is an older child. In the remaining cases, the perpetrator is an adult.
- Children with disabilities and younger children who cannot yet communicate with others are particularly vulnerable.
- Remember that if abuse occurs, the perpetrator is to blame and not the child or yourself.
- Sexual abuse is preventable by creating safe spaces and knowledgeable adults and by encouraging children to talk.
- Ensure professionals and parents are aware of guidelines for safeguarding children from sexual abuse.
- Adopt an open door policy for classrooms, therapy rooms and leisure activities.
- Observe physical signs or changes in behavior or mood during daily routines that could indicate ongoing distress (e.g., marks around private parts, complains about pain, reduced appetite, disturbed sleeping pattern, unexplained nervousness or crying, disturbed toileting habits, etc.).
- Notice if your child seems to know or describes things that you would not expect them to know according to their age and developmental stage (e.g., a pre-school child describing sexual acts).
- Teach your child what kind of behavior is acceptable by others and how to calmly say “No”. For example, tell them who can see their private body parts (e.g., doctors) and instruct them to say “No” to anyone else trying to touch them or asking them to touch their own body parts.
- Children with disabilities are particularly vulnerable and should be educated on healthy social relationships and sexuality. This includes training on basic life skills that increase their independence, such as toileting, dressing, bathing, naming body parts including genitals, etc. This will reduce the amount of high risk situations they are exposed at and increase their ability to communicate any concerns to you.
- Whenever there is one-to-one teaching involved in a setting, home, school or activity clubs, we should have safeguarding measures in place. Especially high risk situations, such as toilet, dressing, swimming and similar should involve two adults at all times. If staff resourcing is an issue and you cannot have two adults present, adopt alternative measures: offer training, issue guidelines for children safeguarding, check adults’ criminal background and professional references, conduct frequent random checks and supervision of activities, adopt one-way mirrors in one-to-one work rooms, film sessions.
- Parents should be allowed to watch educational sessions frequently and whenever this is not possible, alternative means of training them and protecting children should be in place (e.g., film videos that can later on be examined together with parents).
- Teach children to say “No” in a calm way and respect their wishes. Children should be able to make choices that are proportionate to their developmental level and in their own benefit. For example, they should be able to choose not to kiss or hug a relative and shake hands instead. Keep expectations for achievement and maintain a structure that helps kids to develop autonomously but keep these expectations in a balance with individual autonomy and the fact that children have changing needs and the right to choose. Educators should not expect or teach full compliance to any child; they should instead seek to develop every child’s full potential by respecting their preferences and adopting evidence-based practices. Read the benefits of offering choice at https://link.springer.com/article/10.1007/s40489-018–00154‑7
- Risk assessments should be conducted by schools and afterschool clubs (or parents, when professionals are employed at home) and children safeguarding measures should be put in place. Ask your child’s school about such guidelines and if they do not have a policy, share the present document with them.
- Chicago Children’s Advocacy Center https://www.chicagocac.org/resources/sexual-abuse-resources/preventing-sexual-abuse/
- Child Mind Institute https://childmind.org/article/10-ways-to-teach-your-child-the-skills-to-prevent-sexual-abuse/
- Darkness to Light https://www.d2l.org/the-issue/statistics/
- National Society for the Prevention of Cruelty to Children https://www.nspcc.org.uk/preventing-abuse/child-abuse-and-neglect/child-sexual-abuse/?utm_source=meganav&utm_medium=&utm_campaign=
- Stop It Now! https://www.stopitnow.org/sites/default/files/documents/files/prevent_child_sexual_abuse.pdf
- The National Center for Victims of Crime https://victimsofcrime.org/media/reporting-on-child-sexual-abuse
- RAINN (Rape, Abuse & Incest National Network) https://www.rainn.org/statistics/children-and-teens
Created by Dr Katerina Dounavi
Psychologist (EuroPsy), Behavior Analyst (BCBA‑D)
Applied Behavior analysis: The scientific base of an increasingly popular intervention for children with autism
Towards true multidisciplinarity
3 November 2014
Katerina Dounavi explains how behaviour analysis can feed multidisciplinary work.
Multidisciplinarity is regarded as a crucial part of educational (and clinical) assessment and intervention. But collaborative work by cross-disciplinary teams calls for a solid scientific base which permits mutual understanding, conceptual coherence, and consistent applications and evaluations of outcomes. Without this common ground, professionals coming from different backgrounds might end up adopting a mixture of conflicting and incoherent approaches which are counterproductive for those they are trying to help. The evidence from conditions such as Autism Spectrum Disorder (ASD) and other special educational needs suggests that most, if not all, effective interventions are behavioural in nature. This leads us to think that Applied Behaviour Analysis (ABA), the applied branch of the science of behaviour analysis, may well serve as the solid basis required for productive cross-discipline work that enhances students’ learning.
ABA’s methodology is different from traditional approaches in that it emphasises data-based decision making. It makes use of operational definitions of target behaviours; the break-up of complex skills into teachable units; objective measures of progress; and the implementation of scientific principles and methods in teaching. These include reinforcement, shaping and prompting. Prompting is the process of encouraging desired behaviours. Reinforcement is the rewarding of these behaviours. shaping involves working gradually towards a desired behaviour in small steps that converge upon the target. Professionals trained in ABA, whatever their area of expertise, share the same code of ethics and a focus on evidence-based procedures. These cornerstones in the practice of behaviour analysts – be they psychologists, medical doctors, teachers, speech and language pathologists or allied-health professionals – allow them to collaborate efficiently, and to bring in their special expertise while following a common scientific route. In ABA-based educational programmes for students with ASD, a team of ABA-trained professionals would gather before the intervention starts and assess the student’s needs in different developmental areas. These might include academic, social, communication or motor skills. This assessment would be the baseline against which the student’s progress would be measured, and different professionals would contribute according to their expertise. Occupational therapists, for instance, would provide the list of fine and gross skills to assess, according to the student’s age. An individualised educational curriculum would then be set for the student, incorporating teaching methods driven from the science, as well as indications of how to break down skills into smaller teachable units and how to monitor progress. Again, different professionals would set the targets and methods for different areas.
Continuous measurement of the student’s progress by all professionals would provide the basis for maintaining teaching procedures that work, and changing or substituting the ones that do not seem to yield the best outcomes. To illustrate how this might work, let’s take a student who is currently receiving ABA-based one-to-one instruction at home and attending a mainstream school with an ABA-trained shadow teacher. At the beginning of the academic year, all professionals involved in the student’s education would meet with parents to discuss the learning goals for the upcoming year and decide on the most appropriate teaching procedures to achieve them. For instance, if the student needed to learn how to respond to the teacher’s questions on specific content, the following strategy might be adopted: the one-to-one tutor would teach the material at home and record progress. The shadow teacher would provide prompts for the student to raise her hand at appropriate times in class. And the teacher would make sure that there were opportunities for praise and other forms of reinforcement for correct responses.
All the professionals involved would gather data on whether the student increasingly participated in class. They would adapt their processes if the outcomes were not as positive as expected.
It is clear that cross-disciplinary work is possible and can prove very fruitful when teaching individuals with a variety of needs. For it to work effectively, however, consistent scientific accountability needs to underpin all strands. The science of ABA has a long-standing history of achieving this level of accountability, and we recommend that more professionals be trained in it.
Dr. Katerina Dounavi, BCBA‑D (Board Certified Behavior Analyst-Doctoral), is a lecturer in the School of Education and Deputy Director of the Centre for Behaviour Analysis at Queen’s University Belfast.
Link to the original article: https://cerp.aqa.org.uk
Many thanks to Anja Chlistalla for translating the article Into German.
Dillenburger, K., Röttgers, H. R., Dounavi, K., Sparkman, C., Keenan, M., Thyer, B., et al. (2014). Multidisciplinary Teamwork in Autism: Can One Size Fit All? The Australian Educational and Developmental Psychologist, 1–16. 10.1017/edp.2014.13
Teach me how to talk: 10 tips for teaching language to children with autism
1. Motivation: Identify reinforcers, i.e., the student’s preferences, and make sure these vary as often as possible.
2. Create opportunities for the students to ask for access to things or activities they like, make comments, respond to other people’s questions.
3. Use a variety of antecedent stimuli (e.g., pictures, objects, questions) so that the acquired skills are functional and easily generalised.
4. Carefully assess the conditions under which the child uses language, so that you can identify where intense teaching is required and which are the next targets to work on.
5. Identify which are the verbal or non-verbal pre-requisite skills that should be taught first in order to facilitate later teaching of more complex verbal skills.
6. Select and teach the use of alternative communication forms (e.g., sign language, picture-based communication systems, text-based communication systems, use of voice-output digital devices) only when a significant delay in teaching speech is foreseen and in combination with teaching this. We should not forget that students will be included in an environment where the majority of people around them use speech as the main means of communication, so our target is that our students can also acquire it. However, since the ability of our student to communicate with others is of crucial importance independently of the used communication form, when the use of Augmentative and Alternative Communication (AAC) forms is deemed necessary, we should carefully assess which methods would better suit our students in their environment.
7. We continuously record data on the student’s progress on all verbal and non-verbal skills we have set, so that we can at any given moment assess which teaching methods are effective and which need to be modified.
8. We carefully plan for the generalisation of mastered skills with other people (e.g., other adults, classmates) and in different settings (e.g., playground, home, school).
9. We teach complex verbal skills to students who are at an advanced developmental level by following the behaviour-analytic methods that have proven to be effective in numerous studies. We do not forget that ABA is an applied science, thus it is effective with individuals of any age that need to learn new skills, independently of whether these are basic skills (e.g., children using single words to ask for things) or complex (e.g., secondary school student responding comprehension questions on a text and reciting history).
10. Finally, we do not forget that many academic skills (e.g., reading, writing, mathematical calculations) are also verbal skills or their progress depends on the progress of verbal skills! Therefore, in order to teach them we use the same evidence-based techniques and a similar manner of analysis as we do for teaching language/verbal behaviour.
Down Syndrome and Autistic Spectrum Disorder: A look at what we know
By George T. Capone, M.D.
This paper was written for the Down’s Syndrome Association newsletter and is reproduced here with the permission of the author and the DSA
During the past 10 years, I’ve evaluated hundreds of children with Down syndrome, each one with their own strengths and weaknesses, and certainly their own personality. I don’t think I’ve met a parent who does not care deeply for their child at the clinic. Their love and dedication is obvious. But some of the families stand out in my mind. Sometimes parents bring their child with Down Syndrome to the clinic — not always for the first time — and they are deeply distraught about a change in their child’s behaviour or development. Sometimes they describe situations and isolated concerns that worry them such as their child has stopped learning new signs or using speech. He is happy playing by himself, seeming to need no one else to make the odd game (shaking a toy, lining things up) he is playing fun. When they call to him, he doesn’t look at them. Maybe he isn’t hearing well? He will only eat 3 or 4 foods. The suggestion of a new food, or even an old favourite, brings about a tantrum like no other. He is constantly starting at the lights and ceiling fans. Not just while they pass by, but obsessively. Getting him to stop staring at the lights is sometimes difficult and may result in a scene. He requires a certain order to things. Moving a chair to another spot in the room upsets him until it is returned to its usual spot.
Some families do their own research and mention they think their child may have autistic spectrum disorder (ASD) along with Down Syndrome. Others have no idea what may be happening. They do know it isn’t good and they want answers now. This article is for families in situations like this and other, similar ones. If your child has been dually-diagnosed with Down Syndrome and Autistic Spectrum Disorder (DS-ASD) or if you believe your child may have ASD, you will learn a little more about what that means, what we are learning through data collection, and insights to the evaluation process.
There is little written in the form of research or commentary about DS-ASD. In fact, until recently it was commonly believed that the two conditions could not exist together. Parents were told their child had Down Syndrome with a severe to profound impairment without further investigation or intervention into a diagnostic cause. Today, the medical profession recognises that people with Down Syndrome may also have a psychiatric ‑related diagnosis such as ASD or Obsessive Compulsive Disorder (OCD). Because this philosophy is relatively new to medical and educational professionals, there is little known about children and adults with DS-ASD medically or educationally.
Over the past six years we have gathered data and studied DS-ASD at Kennedy Krieger Institute. We have collected and analysed data from clinical medical evaluations, psychological and behavioural testing, and MRI scans of the brain. We now follow a cohort of approximately 30 children with DS-ASD through the Down Syndrome Clinic, possibly the largest group of children with DS-ASD that has been gathered.
What Should I Look For?
Signs and Symptoms
As parents, it is common, if not expected, for you to worry at times about your child’s development. It is also common to hear only part of the criteria for a particular label. This is especially true when it comes to DS-ASD because there is little information available on the topic. This can be especially troublesome if your child suddenly picks up a new habit you associate with ASD such as incessantly shaking toys. The children we have seen at Kennedy Kreiger Institute who have DS-ASD present symptoms in several different ways, which we have separated into two general groups:
Children in this first group appear to display “atypical” behaviours early. During infancy or toddler years you may see:
- repetitive motor behaviours (fingers in mouth, hand flapping),
- fascination with and staring at lights, ceiling fans, or fingers,
- extreme food refusal,
- repetitive language problems (poor understanding and use of gestures) possibly giving the appearance that the child does not hear, and
- spoken language may be highly repetitive or absent.
Along with these behaviours, other medical conditions may also be present including seizures, dysfunctional swallow, nystagmus (a constant movement of the eyes), or severe hypotonia (low muscle tone) with a delay in motor skills.
If your child with Down Syndrome is young, you may see only one or a few of the behaviours listed above. This does not mean your child will necessarily progress to have autistic spectrum disorder. It does mean that they should be monitored closely and may benefit from receiving different intervention services (such as sensory integration) and teaching strategies (such as visual communication strategies or discrete trial teaching) to promote learning.
A second group of children are usually older. This group of children experience a dramatic loss (or plateauing) in their acquisition and use of language and social-attending skills. This developmental regression may be followed by excessive irritability, anxiety, and the onset of repetitive behaviours. This situation is most often reported by parents to occur following an otherwise “typical” course of early development for a child with Down Syndrome. According to parents, this regression most often occurs between ages three to seven years. The medical concerns and strategies for these two groups may be different. There is not enough information available to know at this time. However, regardless of how or when ASD is first discovered, children with DS-ASD have similar educational and behavioural needs once they are identified.
Signs and Symptoms Vary
Although we are documenting some similarities in the way DS-ASD presents, autism is what is considered a spectrum disorder. This means every child with DS-ASD will be different in one way or another. Some will have speech, some will not. Some will rely heavily on routine and order, and others will be more easy-going. Combined with the wide range of abilities seen in Down Syndrome alone, it can feel mystifying. It is easier if you have an understanding of ASD disorders separate from Down Syndrome.
Autism, autistic-like condition, autistic spectrum disorder (ASD), and pervasive developmental disorder (PDD) are terms that mean the same thing, more or less. They all refer to a neurobehavioural syndrome diagnosed by the appearance of specific symptoms and developmental delays early in life. These symptoms result from an underlying disorder of the brain, which may have multiple causes, including Down Syndrome. At this time, there is some disagreement in the medical community regarding the specific evaluations necessary to identify the syndrome or the degree to which certain “core-features” must be present to establish the diagnosis of ASD in a child with Down Syndrome. Unfortunately, the lack of specific diagnostic tests creates considerable confusion for professionals, parents, and others trying to understand the child and develop an optimal medical care and effective educational programme.
There is general agreement that:
- Autism is a spectrum disorder: it may be mild or severe.
- Many of the symptoms overlap with other conditions such as obsessive-compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD).
- ASD is a developmental diagnosis. Expression of the syndrome varies with a child’s age and developmental level.
- Autism can co-exist with conditions such as learning disability, seizure disorder or Down Syndrome.
- Autism is a life-long condition.
The most commonly described areas of concern for children with ASD include:
- Communication (using and understanding spoken words or signs),
- Social skills (relating to people and social circumstances),
- Repetitive body movements or behaviour patterns.
Of course there is inconsistency in any of these areas in all children, especially during early childhood. Children who have ASD may or may not exhibit all of these characteristics at any one time nor will they consistently demonstrate their abilities across similar circumstances. Some of the variable characteristics of ASD we have commonly observed in children with DS-ASD include:
- Unusual response to sensations (especially sounds, lights, touch or pain),
- Food refusal (preferred textures or tastes),
- Unusual play with toys and other objects,
- Difficulty with changes in routine or familiar surroundings,
- Little or no meaningful communication,
- Disruptive behaviours (aggression, throwing tantrums, or extreme non-compliance),
- Hyperactivity, short attention, and impulsiveness,
- Self-injurious behaviour (skin picking, head hitting or banging, eye-poking, or biting),
- Sleep disturbances, and
- History of developmental regression (esp. language and social skills).
Sometimes these characteristics are seen in other childhood disorders such as attention deficit hyperactivity disorder or obsessive compulsive disorder. Sometimes ASD is overlooked or considered inappropriate for a child with Down Syndrome due to cognitive impairment. For instance, if a child has a high degree of hyperactivity and impulsiveness only the diagnosis of ADHD may be considered. Children with many repetitive behaviours may only be regarded as having stereotypy movement disorder (SMD), which is common in individuals with severe cognitive impairments.
Most parents agree that severe behaviour problems are usually not easily fixed. Finding solutions for behavioural concerns is one reason families seek help from physicians and behaviour specialists. Compared to other groups of children with cognitive impairment, those with Down Syndrome, as a group, are less likely to have behavioural or psychiatric disorders. When they do, it is sometimes referred to as having a “dual diagnosis”. It is important for professionals to consider the possibility of a dual diagnosis (Down Syndrome with a psychiatric condition such as ASD or OCD) because:
- It may be responsive to medication or behavioural treatments, and
- A formal diagnosis may entitle the child to more specialised and effective educational and intervention services.
If you think your child may have ASD, share this before or during your evaluation. Don’t wait to see what might happen.
Estimating the prevalence or occurrence of ASD among children and adults with Down Syndrome is difficult. This is partly due to disagreement about diagnostic criteria and incomplete documentation of cases over the years. Currently, estimates vary between 1 and 10%. I believe that 5–7% is a more accurate estimate. This is substantially higher than is seen in the general population (.04%). and less than other groups of children with learning disabilities (20%). Apparently, the occurrence of trisomy 21 lowers the threshold for the emergence of ASD in some children. This may be due to other genetic or other biological influences on brain development.
A review of the literature on this subject since 1979 reveals 36 reports of DS-ASD (24 children and 12 adults). Of the 31 cases that include gender, an astonishing 28 individuals were males. The male-to-female ratio is much higher than the ratio seen for autism in the general population. Additionally, in reports that include cognitive level, most children tested were in the severe range of cognitive impairment. Generally, the cause of ASD is poorly understood, whether or not it is associated with Down Syndrome. There are some medical conditions in which ASD is more common such as Fragile‑X syndrome, other chromosome anomalies, seizure disorder, and pre-natal or perinatal viral infections. Down Syndrome should be included in this list of conditions. The impact of a pre-existing medical condition such as Down Syndrome on the developing brain is probably a critical factor in the emergence of ASD disorder in a child.
Brain Development and ASD
The development of the brain and how it functions is different in some way in children with DS-ASD than their peers with Down Syndrome. Characterising and recording these differences in brain development through detailed evaluation of the situation will provide a better understanding of the situation and possible treatments for children with DS-ASD.
A detailed analysis of the brain performed at autopsy or with magnetic resonance imaging MRI in children with autism shows involvement of several different regions of the brain:
- The limbic system, which is important for regulating emotional response, mood and memory,
- The temporal lobes, which are important for hearing and normal processing of sounds,
- The cerebellum, which co-ordinates motor movements and some cognitive operations, and
- The corpus callosum, which connects the two hemispheres of the cortex together.
At Kennedy Krieger Institute, we have conducted MRI studies of 25 children with DS-ASD. The preliminary results support the notion that the cerebellum and corpus callosum is different in appearance in these children compared to those without Down Syndrome alone. We are presently evaluating other areas of the brain, including the limbic system and all major cortical subregions, to look for additional markers that will distinguish children with DS-ASD from their peers with Down Syndrome alone.
Brain Chemistry and ASD
The neurochemistry (chemistry of the brain) of autism is far from clear and very likely involves several different chemical systems of the brain. This information provides the basis for medication trials to impact the way the brain works in order to elicit a change in behaviour. An analysis of neurochemistry in children with ASD alone has consistently identified involvement of at least two systems.
- Dopamine: regulates movement, posture, attention, and reward behaviours; and
- Serotonin: regulates mood, aggression, sleep, and feeding behaviours.
Additionally, opiates, which regulate mood, reward, responses to stress, and perception of pain, may also be involved in some children. Detailed studies of brain chemistry in children with DS-ASD have not yet been done. However, our clinical experience in using medications that modulate dopamine, serotonin or both systems has been favourable in some children with DS-ASD.
How Do I Find Out?
Obtaining an Evaluation
If you suspect your child with Down Syndrome has some of the characteristics of ASD or any other condition qualifying as a dual diagnosis, it is important for him to be seen by someone with sufficient experience evaluating children with cognitive impairment — ideally Down Syndrome in particular. Some of the same symptoms which occur in DS-ASD are also seen in stereotypy movement disorder, major depression, post-traumatic stress disorder, acute adjustment reactions, obsessive-compulsive disorder, anxiety disorder, or when children are exposed to extremely stressful and chaotic events or environments.
Sometimes when children with Down Syndrome are experiencing medical problems that are hidden — such as earache, headache, toothache, sinusitis, gastritis, ulcer, pelvic pain, glaucoma, and so on — the situation results in behaviours that may appear “autistic-like” such as self-injury, irritability, or aggressive behaviours. A comprehensive medical history and physical examination is mandatory to rule out other reasons for the behaviour. When co- operations is elusive, sedation or anaesthesia may be required. If so, use this “anaesthesia time” effectively by scheduling as many specialty examinations as are feasible at one session. In addition to the medical assessment, you will be asked to help complete a checklist to determine whether or not your child has ASD. I use the Autism Behaviour Checklist (ABC). But there are others that are also used such as the Childhood Autism Rating Scale (CARS) and the Gilliam Autism Rating Scale (GARS). Each of these is completed either in an interview with parents or done by parents before coming to the appointment. They are then scored and considered along with clinical observation to determine if your child has ASD.
Obstacles to Diagnosing DS-ASD
“If it looks like a duck, and it quacks like a duck… guess what?”
Parents sometimes face unnecessary obstacles in seeking help for their children. Parents have shared several reasons demonstrating this. Some of the more common include:
Failure to Recognise the Dual Diagnosis
Problem:Failure to recognise the dual diagnosis except in the most severe cases.
Result: This is frustrating for everyone who is actively seeking solutions for a child. If you are in this situation and feel that your concerns are not taken seriously, keep trying. The best advice is to trust your gut feeling regarding your child. Eventually you will find someone willing to look at all the possibilities with you.
Lack of Acceptance by Professionals
Problem: There is sometimes a lack of acceptance by professionals that ASD can co-exist in a child with Down Syndrome who has cognitive impairment. They may feel an additional label is not necessary or accurate. Parents may be told “This is part of ‘low functioning’ Downs Syndrome.” Today we know that this is not right. Children with DS-ASD are clearly distinguishable from children with Down Syndrome alone or those who have Down Syndrome and severe cognitive impairment when standardised diagnostic assessment tools such as the ABC are used.
Resultat:Parents become frustrated and may give up trying to obtain more specific medical treatment or behavioural intervention.
Confusion in Parents
Problem: Lack of acceptance, understanding, awareness, or agreement on the part of parents or other family members, particularly of very young children, about what’s happening. Initial reactions by families and parents vary considerably from, “This too shall pass” to “Why isn’t he doing as much as other kids with DS?”
Result: Parents in this situation may find themselves at odds with each other about the significance of their child’s behaviour and what to do about it. As a result, marriages are stressed, parenting relationships with other children are strained, and life is tough altogether. Unfortunately, I have found that parents in this situation almost universally withdraw from local Down Syndrome support groups or other groups that may provide support. There are a variety of reasons for this including “the topics discussed don’t apply to my child”, “It’s just too hard to see all those children doing so much more than my child”, and “I feel like people think I’m a bad parent because of my daughter’s behaviour.” Ideally someone in the parent group would recognise this when it is happening and offer additional support instead of watching them withdraw. What is worrisome is that the very parents who are most in need of support and assistance cannot or do not receive it within the context of their local parent group. In fact, there may not be another parent in the group with a child who is similar because DS-ASD is uncommon and not easily shared. It is critical that parents have an opportunity to meet and learn from other parents whose children also have DS-ASD. Despite the underlying medical condition (trisomy 21), the neurobehavioural syndrome of ASD may mean that a support group for families of children with autism will be helpful as well. However, because of the lack of acceptance or knowledge about the dual diagnosis, these support groups can be equally daunting.
What Does it Mean?
Obtaining a diagnosis of DS-ASD is rarely helpful in understanding how ASD affects your child. It is complicated by the lack of information available, making it difficult to discern appropriate medical and educational options. To determine what behaviors are most common in DS-ASD we are conducting case-control studies which randomly match (for gender and age) a child with DS-ASD with a child who has Down Syndrome without ASD. These comparisons are based on the information obtained from the ABC together with a detailed developmental history and behavioural observation. Through this process we have been able to determine the following:
Children with DS-ASD were more likely to have:
- History of developmental regression including loss of language and social skills,
- Poor communication skills (many children had no meaningful speech or signing),
- Self-injurious and disruptive behaviours (such as skin picking, biting, and head hitting or banging),
- Repetitive motor behaviours (such as grinding teeth, hand flapping, and rocking),
- Unusual vocalisations (such as grunting, humming, and throaty noises),
- Unusual sensory responsiveness (such as spinning, staring at lights, or sensitivity to certain sounds),
- Feeding problems (such as food refusal or strong preference for specific textures), and
- Increased anxiety, irritability, difficulty with transitions, hyperactivity, attention problems, and significant sleep disturbances.
Other observations include:
- Children with DS-ASD scored significantly higher than their peers with Down Syndrome alone on all five subscales of the ABC: sensory function, social relating, body and object use, language use, and social skills.
- Children with DS-ASD show less impairment in social relatedness than those with ASD only.
- Children with DS-ASD show more preoccupation with body movement and object use than children with ASD alone.
- Children with DS-ASD scored higher on all five subscales of the ABC than children with severe cognitive impairment alone.
- Among children with Down Syndrome only, even those with severe cognitive impairment do not always meet the criteria for ASD.
The conclusion I draw from this data is children with DS-ASD are clearly distinguishable from both “typical” children with Down Syndrome and those with severe cognitive impairment (including children with Down Syndrome). Thus, it is probably incorrect to suggest autistic-like behaviours are entirely due to lower cognitive function. However, the fact that autistic features and lower cognition are associated indicates there is some shared determinant(s) that is common to both features (ASD and lower cognition) of the condition.
Associated Medical Conditions
There are questions about the possibility of similarities in the variety of medical conditions associated with Down Syndrome in general in children with DS-ASD. To determine this we used the same matching scheme as described above. It is important to point out the number of matched pairs currently in our study is quite small and, as a result, some of these findings may not hold up as we examine more children.
Children with DS-ASD were more likely to have:
- Congenital heart disease and anatomical GI tract anomalies,
- Neurological findings, (i.e. seizures, dysfunctional swallow, severe hypotonia and motor delay),
- Ophthalmologic problems,
- Respiratory problems (i.e. Pneumonia and sleep apnoea), and
- Increased total number of medical conditions.
After the Evaluation
If you child has DS-ASD, obtaining a diagnosis or label may be a relief of sorts. The addition of ASD brings new questions. From a medical perspective it is important to consider use of medication, particularly in older children, for specific behaviours. This is especially true if these behaviours interfere with learning or socialisation. While there is no cure or remarkably effective treatment for Down Syndrome and autistic spectrum, certain “target behaviours” may be responsive to medication. Some of these behaviours include:
- Hyperactivity and poor attention,
- Irritability and anxiety,
- Sleep disturbance,
- Explosive behaviours resulting in aggression/disruption (can sometimes be reduced), and
- Self-injury (can sometimes be reduced).
As you continue to take care of your child, make a point to take care of yourself and your family — in that order. You have a life and a family to consider. Recognise that there is only so much time, energy and resources that you can put into this “project”. Of course there will be cycles, of good time and bad, but if you can’t find some way to renew your emotional spirit, the “burn-out” is inevitable. There is a higher rate of anxiety, sleep problems, lack of energy, depression, and failed or struggling marriages under these circumstances. Learn to recognise your own difficulties and be honest with yourself and your spouse about the need for help. Counselling and medication may go a long way in helping you to be at your best for everyone’s sake.
Clearly there is a great deal to be learned about children with Down Syndrome who are dually diagnosed with autism spectrum disorder. In the meantime, it is essential for parents to educate themselves and others about this condition. Families must work on building a team of health-care professionals, therapists and educators who are interested in working with their child to promote the best possible outcome. Research efforts must move beyond mere description to address causation, early identification, and natural history. Specific markers in the development of the brain which can distinguish DS-ASD from “typical” Down Syndrome and “typical autism” need to be sought; and the possible benefits of various treatments need ot be more carefully documented. Realising these goals will take a very long time to accomplish and must be approached with a spirit of support, co-operation, and caring both for individual children and the larger community of children with DS-ASD.
Thank You for approving to translate this Article and publish it on our Website to George T Capone, MD. George T Capone, MD, is the Director of the Down Syndrome Clinic and Attending Physician on the Neurobehavioral Unit at Kennedy Krieger Institute in Baltimore, Maryland.
Read and download the Original Version in ENG here:
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- Howlin, P., Wing, L., and Gould, J. “The Recognition of Autism in Children with Down Syndrome: Implications for Intervention and Some Speculations About Pathology.” Developmental Medicine and Child Neurology 37:406–414 (1995).
- Ghaziuddin, M., Tsai L., and Ghaziuddin, N. “Autism in Down- Syndrome: Presentation and Diagnosis” Journal of Intellectual Disability Research 36:449–456 (1992).
- Rapin, I., “Autism.” New England Journal of Medicine 33(2): 97–104 (1997).
- Campbell, M., Schopler, E., Cueva, J., and Hallin, A. “Treatment of Autistic Disorder.” Journal of the American Academy of Child and Adolescent Psychiatry 35(2): 134–143 (1996).
- Rogers, S. “Neuropsychology of Autism in Young Children and Its Implications for Early Intervention.” Mental Retardation and Development Disabilities Research Reviews 4: 104–112 (1998).
- Forness, S. and Kavale, K. “Autistic Children in School: The Role of the Pediatrician.” Pediatric Annals 13(4):319–328 (1984).
Thank You for Translating this Article to Miriam Zoller.
Behavioral and skill-based early intervention in children with autism
HTA report | Summary
Weinmann S, Schwarzbach C, Begemann M, Roll S, Vauth C, Willich SN, Greiner W:
Autistic syndromes include early childhood autism (kanner syndrome), Asperger’s syndrome and atypical autism forms or non-specified profound developmental disorders. In autistic syndromes, there are impairments (1) of communication and (2) of social interaction. Furthermore (3) the children exhibit stereotypical, repetitive behavior to varying degrees and have certain special interests.
In recent years, epidemiological studies have shown an increase in the prevalence rate. So far, it has been unclear whether this increase can be explained mainly by differences in study methodology or actually reflects an epidemiologically more frequent occurrence. People with autistic syndromes need support and care over a longer period of time, as well as often throughout life. Children or adolescents with autism attend all available types of kindergarten and school, using special forms of instruction in small groups to meet the special needs of children. However, the promotion and integration of the affected children, which is fair to the syndrome, has so far been poorly implemented in Germany. Adults with autism are cared for by different institutions and social services in Germany, with very few attuned to their specific problems.
Both drug and non-medi are treating methods for autism. Some medications can alter certain aspects of behavior, affects or activity levels. Evidence of an improvement in the overall course of drug intervention does not yet exist, so the main interventions are non-drug in nature and to the promotion of development, the influence of behaviour and the promotion of behaviour. Family and social ties. There are now a variety of psychosocial interventions. Most are based on learning theory and behavioural therapy concepts and take into account the particular impairments in perception, emotional responses, social interactions and communication patterns.
However, the systematic application and evaluation of such models in Germany is now more of an exception. Since the publication of studies in which a significant proportion of children have undergone an intelligence level in the normal area, which is mostly developed in the United States of America (USA), even alters and an admission to a normal school achieved, high expectations. However, the early studies were criticised due to methodological deficiencies and selection effects, so that the analysis of recent studies has to provide guidance on which early interventions should also be encouraged in Germany and which intervention components contribute to efficacy.
The evaluation of early intervention programmes is a major challenge due to the nature of the disruption and methodological problems. There are currently no uniform standards for assessing the effectiveness of early interventions in autism. Results parameters in studies on autistic syndromes are intended to include core areas of autism (such as developmental steps, communicative skills, social interactions, linguistic skills, repetitive behaviors), special behavioral problems (such as sleep disturbances and aggression), intelligence and quality of life, but also objective parameters such as school admission or the need to take home. This health technoloy assessment (HTA) report examines the question of how the health effectiveness and safety of behavioral or prefabric-based early interventions in autistic syndromes with each other and compared to a standard treatment. It also examines whether there is evidence of particular factors for effectiveness, such as the type and intensity of treatment.
For the economic part, the question is based on the cost-effectiveness of the various behavioral And ready-based interventions and the costs of such care. It is also to be examined whether, on the basis of ethical and legal considerations, conclusions can be drawn about the application of the interventions under consideration in those with autistic syndrome in practice.
The relevant literature is identified by a systematic electronic literature search, a hand search and the cover letter of relevant institutions. This survey does not claim to be exhaustive.
From 2000 onwards, controlled studies published in German or English will include children up to the age of 12 who have a diagnosis from the autism spectrum. Diagnostic and statistical manual of mental disorders (DSM) or international classification of diseases (ICD). The interventions reviewed are behavioral or prefabric-based interventions designed specifically for children with autism. Behavioural or prefabric-based intervention is defined here as an intervention aimed at improving behaviour and/or the functional skills or development process of children, and behavioral therapy strategies or a training of specific skills. The minimum number of study participants must be ten per intervention group. Only studies with a survey of outcomes (treatment results) of at least six months after the start of the intervention are taken into account. There are no restrictions on the endpoints under investigation. The selection of the studies is carried out independently by two scientists, taking into account the pre-defined inclusion and exclusion criteria.
Based on the defined search terms and she search carried out, after the exclusion of duplicate studies, 2,281 Hits will be paid for medical research (including 999 hits for clinical primary studies, 1,252 hits for clinical systematic reviews, and meta-analyses and 30 hits for HTA reports), 235 health economic and 135 hits for ethische/rechtliche/social aspects identified. After reviewing the abstracts, 102 clinical and 52 economic texts are ordered as full texts. In the end, 15 publications of clinical primary studies, eight systematic reviews and an economic publication meet the pre-defined inclusion criteria. Three treatment guidelines citing early interventions in children with autism are reported.
The 15 identified publications of clinical primary studies are based on 14 studies, including eight randomised controlled trials (RCT) and six non-randomised controlled trials. Six studies were conducted in the US, five studies in the UK and one each in Israel, Australia and Norway, none in Germany.
Most studies evaluate intensive early interventions based on the model of Lovaas (Early Intensive behavioural Treatment (EIBT), Applied behavioural analysis (ABA)). Some studies evaluate other interventions that were partly pragmatic and partly follow a particular model (specific parental training, responsive education and prelinguistic milieu teaching (RPMT), joint attention (YES), symbolic gaming (SP) and Picture exchange communication system (PECS)). The interventions studied, as well as the comparative interventions (partly routine treatment, so-called eclectic treatment from mixed elements, waiting list, lower frequency treatment or other specific treatment concept) were very much different.
Based on the evaluated systematic reviews and the evaluated primary studies, behavioral analytical interventions based on the Lovaas model can continue to be considered the best empirically targeted early interventions in children with autism be viewed. In most studies, the subgroup of children with initially higher intelligence quotients (IQ) had better treatment outcomes than the group with lower IQ. Overall, the effect strengths depended heavily on the type of routine treatment. The studies suggest that preschoolers with autism are improving in cognitive and functional areas through behavioural interventions with a minimum intensity of 20 hours per week (expressive language, language comprehension and communication) be able to reach. The core symptoms of autism therefore appear to be quite accessible to early treatment. However, it remains unclear what minimum intensity is necessary and which impact components are responsible for the results. Moreover, there is no solid direct evidence of a superiority of an early start to intervention. Based on the selected studies, no solid statements can be made on the effects of parent, hospital or centre-based programs based on the Lovaas model.
There is no high-quality evidence for other comprehensive early interventions in children with autism. There is also little evidence for the PECS and RPMT, which are basically not comprehensive early interventions but theory-led additional interventions, that the benefits observed in the studies in social communication and language Can be transferred to the everyday life of the children.
The publication identified and included in the economic sub-sector is not methodically and thematically suitable for even beginning to answer the cost-effectiveness or cost effects of early interventions in autism. This study lists costs for an early intervention programme (here based on the Lovaas model) between GBP 15,000 and GBP 30,000. The reference date of this data is not clear. The costs are still not linked to efficiency measures, so no statement can be made about the efficiency of the funds used. A descriptive publication also takes a very brief look at the cost of implementing behavioral early intervention programmes. It states that this can exceed $60,000. Valide statements for the German supply context are not possible.
No publications are identified regarding legal, ethical and social issues. The financial situation of those affected and families is improved by the care development act (Pf-WG). Other legal issues relating to autism arise, for example, in connection with the restriction of decision-making or consent, problems of business capacity or legal representation of the persons concerned. Care is also relevant from an ethical point of view, with patients being cared for in the majority in the home environment, with carers often survived by the autistic individuals. Equal care and care in Germany are also important questions, especially against the background of care in the home environment.
There are few methodically appropriate studies to assess the effectiveness of early interventions in children with autism. Most studies are comparatively short and partly do not have a linked result rating. In many cases, compliance with the therapeutic rules (manual fidelity) has not been levied. Although mostly standardized result parameters were used, the Wechsler intelligence scales used to measure IQ are only partially suitable because they are underestimated by the intelligence in the affected ones. Children can lead.
The lack of high-quality comparative studies does not allow a solid answer to the question of which early intervention is most effective in which children with autism. Overall, it can be determined that intensive, behavioral programs appear most effective under the Lovaas model. This is especially true when they are performed clinic-based. Parental training is better than routine treatment in which a mixture of therapy-elements is used in terms of improving communication. For both clinical and health economic studies, the problem of insufficient generalizability of the study results is in the German supply context. The clinical studies show that effect strengths depend heavily on the type of control intervention. Therefore, other studies, which are carried out in the German or a comparable health system, are particularly desirable.
There is clear evidence that parental involvement in intervention programmes is very important. Ideally, parents should be trained as co-therapists and master the techniques. However, early intervention programmes should also meet the needs of families and must be adapted accordingly.
Early intervention programmes appear most successful when they support families and aim to provide them with skills in dealing with the children involved. For the children, interactions with their peers seem to be of great importance. Only then can a generalisation of the skills learned during specific behavioral interventions be achieved in children’s everyday lives and in daily routines. Likewise, typical autistic behaviors seem to diminish.
Early interventions in children with autism should target specific core areas (such as joint attention, certain linguistic skills, imitation, social interaction). The simultaneous comprehensive consideration of all areas of life seems less sensible. A manalized treatment model seems to have advantages over a mix of many individual components. However, the procedure should in any case be individualised and leave enough room for modifications.
The economic studies are not methodically and thematically suitable for answering the questions raised.
Based on the current study situation, there is insufficient evidence for none of the early behavioral interventions studied in children with autism. The studies and reviews evaluated in this report suggest that preschoolers with autism can achieve improvements in cognitive and functional areas through behavioral interventions with a minimum intensity of 20 hours per week. There is so far no evidence that a substantial proportion of children can achieve a complete normalisation of development. In the studies with the best treatment results, a significant acceleration of the rate of development was achieved in up to half of the children, so that these children are close to the normal values for age-appropriate children or quite within the normal range. In other studies, however, only slight improvements compared to routine treatment could be shown. The core symptoms of autism therefore appear to be quite accessible to early treatment. Most of the evidence is available for the ABA. However, the lower the intensity of treatment, the lower the effects. However, a minimum of required or meaningful treatment intensity cannot be specified. No valid information can be provided on the cost and cost-effectiveness of intensive early interventions in children with autism.
We would like to thank the German agency for Health Technology Assessment/DAHTA German agency for HTA DIMDI-German Institute for medical documentation and information for the permission to put this article on our website.
M.I.N.D. Institute scientists find important clues regarding learning deficits in children with autism
Highly technology eye-tracking headgear shows that autistic children look less at the face of the teaching person compared to normally developing children.
October 7, 2008
(SACRAMENTO, California, USA) A study by scientists at the UC Davis M.I.N.D. Institute has found an important clue as to why children from the autistic spectrum have difficulty imitating other people. They spend less time watching the face of the individuals who are delaying new skills.
This study was conducted using high-technology eye-tracking head equipment and software that accurately measured what a child was looking at during a learning exercise. The researchers deployed an actor to demonstrate a task on the computer screen.
“We found that the children with autism were focused on the activities of the lead person and that they were much less likely than normally developing children to look at the protester’s face,” said Giacomo Vivanti, a scientist according to the doctoral thesis at the M.I.N.D. Institute and the leading author. “The normally developing children may have looked at the face of the precurtain in order to obtain information about what to do or how to do this appropriately; children with autism are less likely to seek this information. This is an important finding because children with autism struggle to learn from others. Part of the solution may lie here as to why this is so,” says Vivanti.
“Imitation plays an important role in how children learn, but also how individuals interact socially,” says M.I.N.D. Institute scientist and lead study author Sally J. Rogers. She has studied impairment in imitation for more than 20 years. “This is a characteristic that we see as early as how it is possible to establish the diagnosis of autism; and it’s one of the features that’s also present in slightly impaired adults,” Rogers says.
Limited imitation leads to additional impairments in the sharing of feelings, in the imaginary play, in pragmatic communication and in the understanding of emotional states of other persons. For years, scientists thought children with autism and similar disorders had difficulty learning through imitation because they had a lack of motor skills, or because they paid no attention to the exercise being performed. This current study excludes this hypothesis.
“We now understand more about how the deficits in imitation come about; and we may therefore, after additional research, also address them in such a way that children with autism can be helped to develop a more natural repertoire of behaviors, “reports Rogers, a researcher at UC Davis and professor of psychatrics. And behavioral sciences.
In this latest study, published on the internet in June and will appear in the Journal of Experimental Child Psychology in November; 18 children aged 8–15 with high-unctioning autism were carefully matched with 13 normally developing children. While wearing the special eye-tracking head set, the children were shown video clips that were between 7–19 seconds long. After watching the clips, the children made up the performed movements. The findings confirmed previous research that children with autism have difficulty with imitation exercises compared to the age-developing children. But it also became clear that children with autism, as well as other children, paid attention to the activities demonstrated. This excluded the hypothesis of lack of attention in relation to tasks. “This finding is particularly important,” Rogers says. “Now we can exclude this variable. We know that the children are looking at the tasks.”
Researchers have also found that successfully performing tasks of children with autism increased when the time they had to look at them increased; However, this was not related to the basic skills in motor skills; This ruled out the possibility that a deficiency in motor dexterity could cause the effects in imitation.
Finally, the study showed that both groups of children turned their attention from activity to the precursout, however, the children with autism made this much less common.
According to Rogers, these findings suggest that imitation is not just a repeat of an act, but the understanding of the occasion for that activity.
“This information is conveyed through our face,” she explains.
Rogers and Vivanti will continue to try to understand how this difference in looking at faces affects more cluttered learning and understanding.
“We’re looking at how children look at feelings and intentions transmitted through the premier’s face. And we also look at how informing the faces by looking or not looking affects the understanding and imitation of the observed actions,” Vivanti says.
Based on these studies, Vivanti and Rogers hope they can one day develop studies designed to show whether or not looking in faces is an important part of the copycat process. “It could be that people with autism might be better at recognizing feelings, they might start to mimic their role models quite naturally, as other individuals do,” Rogers says. ” If it’s a matter of how to understand the information from the face, then it provides you with a goal for intervention. ”
The UC Davis M.I.N.D. Institute, in Sacramento, Calif., was founded in 1998 as a unique interdisciplinary research center where parents, community boards, scientists, doctors and volunteers work together to address autism and others Neurodevelopmental disorders.
More information about the institute can be found on the Internet: www.ucdmc.ucdavis.edu/mindinstitute/ .
Thank You for Allowing this Article to be translated and published to: Phyllis Brown, Senior Public Information Officer, UC Davis M.I.N.D. Institute.
Responsible for the translation: Silke Johnson