Down syndrome plus autism, what does this mean?
Down syndrome and autistic disorders - what we know today?
(All that apply to us ... I will highlight red) George T. Capone, MD
The author, George T. Capone MD, is director of the Down Syndrome Clinic and doctor in the Neurobehavioral Unit at Kennedy Krieger Institute in Baltimore, Maryland. This article appeared in the journal Disability Solutions, Volume 3, Issue 5 & 6, a publication of the Enoch-Gelbard Foundation.
Translation: Cora Halder, published in 'Life with Down Syndrome' No. 34, May 2000 There is little literature or studies on dual diagnosis of Down syndrome and autism. Rather, it was assumed before not very long ago, that these two diagnoses may occur together.
They told parents that their child with Down syndrome mentally severely impaired, was without looking for a cause . Today, medicine has recognized that even occur in people with Down syndrome, pervasive developmental disorders such as autism or obsessive compulsive disorder, can. Because these findings for professionals in the medical and educational field are still relatively new, we know only little about children and adults with this dual diagnosis. The Kennedy Krieger Institute for some years been collecting data on the subject. First results are presented in this article.
Pay attention to what should I do? Signals and symptoms
It is normal that parents are always concerned about their child's development. It is also normal, that one has often to specific features only a partial knowledge. This is especially the case with the diagnosis of Down syndrome and autism, because it is so little information.
This can be particularly worrying if your child suddenly shows a new behavior that you might associate with autistic behaviors, such as. the incessant shaking of an object . The children that we saw at the Kennedy Krieger Institute and the Down syndrome and autism show very different symptoms have been divided into two main areas have:
Group 1 (applies to all complete) show
children in the first group Early on a atypical behavior. As an infant, or during the toddler period one can possibly observe the following behaviors:
- repetitive motor mannerisms, such as fast movements to be Banned from light-source fixing lamps, ceiling fans, or fingers
- extreme deprivation of food, problems of hands and fingers
- language comprehension (the child seems to sign not to understand and apply them yourself not to, which gives the impression that the child might not hear)
- repetitive or stereotyped use of language
With these behaviors also a number of occurrence of other medical conditions, such as seizures, swallowing problems. Nystagmus or
marked muscle weakness (hypotonia), which leads to a delay in motor development. If your child with Down syndrome is still very small, you may make one or the other symptoms mentioned here laid. This does not mean that it must develop your child to an autistic disorder. It only means that the child should be investigated and perhaps could benefit from a special educational and therapeutic support program (such as sensory integration and visual communications).
Group 2
A second group of children is mostly older. These children can notice a dramatic decrease
or stop in their language acquisition and a loss of language and social skills. This development may cause decline as a consequence of extreme sensitivity and anxiety and mark the start of repetitive behaviors.
This situation occurs most often, the parents, according to according to a first for children with Down syndrome during normal development . Most parents report that the development decline between three and seven years occurs.
The medical treatment and support for these two groups may be different. It is still lacking in sufficient information order to assess this accurately. Regardless of the time, how and when autism disorders are discovered for the first time that children with the dual diagnosis should receive the necessary educational and therapeutic support.
What is autism? Different signals and symptoms
Although we will report some similarities that occur in children with Down syndrome and autism, they should not lose sight of the fact that autism is called a syndrome that includes a plurality of individual symptoms. This means that children with the diagnosis still differ greatly. Some do not speak other
. Some of them need necessarily a specific routine and order, others are more flexible
. This combined with the enormous variability in skills, which we find alone in Down syndrome, can be very confusing. The whole thing is to understand better when you have some knowledge about autism, regardless of Down syndrome. Infantile autism, autistic personality disorder, autistic disorders are terms which all mean more or less the same. Autism is now considered primarily seen from their behavior defined syndrome with a variety of symptoms and developmental delays in early childhood. These symptoms are based on a dysfunction of the brain, the different causes have, including Down syndrome can. Currently, there are differences of opinion among physicians on what criteria are needed to diagnose autism or how severe the core symptoms must be to make the diagnosis in a child with Down syndrome. To
Unfortunately the lack of a suitable diagnostic test procedure confusion among professionals, parents and others who know the child and develop the best medical care and effective learning programs. There is agreement on the following points:
- Autism is a syndrome. It can be very different characteristics
- Many symptoms overlap with those of other disorders such as obsessive-compulsive disorder or hyperactivity.
- Autism is a developmental disorder. Symptoms depend on age and level of development of the child.
- autism can occur together with an intellectual disability, epilepsy, or with Down syndrome
- autism is a lifelong condition.
The problem areas that are described in connection with autism most often are:
- communication (use and understand words and gestures )
- social skills (in contact with others or in certain situations
- stereotyped and repetitive body movements or behavior patterns .
are young children, especially during the time these abnormalities is not constantly present. The children, all or have only some characteristics of autism syndrome. Also, their skills under the same conditions are very volatile. Some of these variable characteristics, which we usually find in children with Down syndrome and autism syndrome:
- unusual reaction to stimuli, especially noise, light, touch or pain),
- refusal of food (a preference for certain foods or flavors)
- strange game behavior or persistent preoccupation with objects
- Unease over changes in daily routine or in the family environment,
- little or no meaningful communication,
- disturbing behaviors (aggressiveness, tantrums or extreme disobedience),
- self-injurious behavior (on the skin pulling on the head strike or hit his head),
- insomnia,
- decline (especially in language and social skills). Sometimes you can
these abnormalities in other types of disorders that occur in childhood notice, such as hyperactivity or an obsessional neurosis.
is sometimes not detected or autism comes as a possibility in a child with Down syndrome is not considered because of his cognitive deficits. example, if a child is very active and impulsive, is intended primarily for the diagnosis of hyperactivity. Recurrent behaviors are classified as SMD quickly, something that is common in people with severe intellectual disability. Most parents find it difficult to get these behavioral problems under control. In order to find solutions to these problems, families often seek the advice of experts. In fact, children with Down syndrome have a group in general, less behavioral or other mental problems than other children with a mental impairment. However, if there are behavioral problems, must be considered in the dual diagnosis. It is important for professionals that they are aware of the possibility of such a dual diagnosis, because
- perhaps can be improved through an educational and therapeutic services, the situation
- with an official diagnosis, the child has better access to special effective assistance
If you suspect that your child autistic disorders are present, make it from a professional. Wait do not you just see what happens.
occurrence
It is difficult to specify how frequently Autism in children and adults with Down syndrome occurs. This comes on the one hand by the fact that there is disagreement on the precise criteria, and therefore the other hand, because a complete lack documentation of these cases. At present, the estimates range between one and ten percent. I think a number of five to seven percent most closely corresponds to reality. This is much higher than in the general population (0.04 percent) and less than in other groups of children with a mental disability (20 percent). It looks like that is greater in trisomy 21, the chance for the occurrence of autism. This can be caused by different genetic or biological Influences on brain development.
The literature on this subject since 1979, describes 36 cases of Down syndrome and autism (24 children and 12 adults). Of the 31 cases where the sex has been described, surprisingly, 28 were male. The ratio of male / female is much higher than that in autism in the general population.
also emerged from the reports, with the cognitive abilities have been described, shows that most children were severely mentally handicapped. In general, one understands little about the causes of autism and whether a correlation exists with Down syndrome. Some syndromes, such as the fragile X syndrome, other chromosomal disorders, epilepsy and in pre-or postnatal viral infections is autism more common. Also, the Down syndrome should be included on that list.
Because the presence of Down syndrome plays a role in brain development and appears to be a critical factor in the occurrence of an autism disorder.
brain development and autism
The development and functioning of the brain differ in children with Down syndrome and autism from those children who only have Down syndrome. When these differences between two groups of children will be better studied and documented, we would understand children with Down syndrome and autism better and possible Treatment options available. A detailed analysis of the brain, as can be carried out during an autopsy, or by means of a magnetic resonance imaging (MRI) shows that play in children with autism following regions of the brain involved:
- the limbic system, which is important for the emotional for mood and memory,
- the temporal Cortiz that are important for listening and for the processing of sounds
- the cerebellum, which coordinates the motor skills and some cognitive operations
- the corpus callosum, the two hemispheres of the forebrain together connects (I can do anything beruteilen bad .. fakt, it all seems somehow disturbed by us)
the Kennedy Krieger Institute is we have 25 children with Down syndrome and autism studied by magnetic resonance imaging. The first results confirm our suspicions that shows the cerebellum and the corpus callosum in these children a different appearance than in children with Down syndrome. We are also currently engaged with investigating the other brain regions, including the limbic system and all major regions of the cortex in order to get more clues as to whether and in what way they are striking in children with Down syndrome and autism.
How can I find out? If you suspect that your child is different with Down syndrome Characteristics of autism shows that it is important that you go with him to a specialist, who ideally has experience with children with mental retardation or Down syndrome, to introduce your child there. Some symptoms that occur in Down syndrome and autism, we can see in children, the extraordinary stress and are exposed to chaotic events.
It may happen that so-called 'hidden' medical problems such as ear pain, headache, toothache, sinusitis, etc. trigger behaviors such as self-injury, irritability or aggressive behavior reminiscent of autism. A detailed medical history and a thorough investigation is therefore absolutely necessary to rule out other causes for the behavior.
enhanced wear to a medical examination in our institute then asked parents to fill out a checklist. I'm using the Autism Behavior Checklist (ABS), but there are others that will be used, such as the Childhood Autism Rating Scale (CARS) and the Gilliam Autism Rating Scale (GARS). These questionnaires are either together in an interview with the parents or filled out by parents alone before the deadline. You will then be evaluated and together with the medical findings to a statement about the condition of the child. There
difficulties in diagnosis
Unfortunately, it is often unnecessary Difficulties for parents when seeking help for their children. from experience reports from parents can be summarized as follows: a.
The diagnosis is not recognized. This is very frustrating for everyone. If you are in such a situation and makes serious concerns about the child, you should not rest until you have found someone who is serious about having a child and the really very well studied
b. Confusion about the diagnosis.
c. There is the possibility of confusion with other behavioral or psychiatric disorders such as hyperactivity, obsessive compulsive disorder or depression.
parents sometimes have the feeling that it would be better if they were referred by their doctor in a medical teaching center or a Down syndrome clinic, where they present their child. However, this can cost families may be a lot of money because the costs are not covered by insurance. The schools are very hesitant because of the cost issue, to request extra help for children with Down syndrome and autism. This frustration and lack of access to the experts (both in the physician as the teacher) can cause parents to break off contact with traditional services and to resort to more unusual, alternative methods. This must not necessarily be wrong. Individual, creative solutions can be very valuable be, especially if there otherwise is no reliable tools. It is not correct, return the system to the very back, because it can drive families into isolation and then it gets harder to build a group of supporters for the child and his family. It will play in the future, sufficient stress on the family. Parents need urgent assistance.
d. lack of acceptance by experts
sometimes refuse to professionals to recognize that a child with Down syndrome, which usually has cognitive difficulties, at the same time can not have autism. They believe that this dual diagnosis is unnecessary, can not be right. They say the parents in such a Often the case, her child belongs with Down syndrome just to those who do not develop so well. We now know that this is wrong. Children with Down syndrome and autism can be distinguished clearly from children who only have Down syndrome, or those who have, in addition to Down syndrome or other delays in their development. Tests such as the ABS test to prove this clearly. The result may be that parents give up and not continue to change after medical treatment or assistance to the behaviors of the child, are looking for. E.
confusion among parents
often prevails with parents or other family members, particularly among young siblings, a lack of acceptance and understanding of the unknown situation or a lack of awareness of what exactly is going on. The initial reactions of parents or other family members vary from 'That will be so again in' to 'Why he does not progress as other children with Down syndrome? "
parents in this situation often know no way out and are also often divided among themselves how to estimate the behavior of their child and how they can change it. The result is that marriage, so the whole family life suffers as much. I've found that to withdraw completely in such a situation, unfortunately, these families from the Down syndrome group parents or other self-help groups. But there there are various reasons such as: "in the talking points of the other nothing to do with my problems 'or
' I find it difficult to do all the other children that are developing so much better than my child ' or' I feel that other parents feel that I my child promotes not enough that I'm not a good mother, because one child is so different acts. "
It is certainly desirable that someone is aware of the group and its just this family, offering extra help instead of sitting back and watching the retreating family. But just that does not happen normally. Especially parents who most need to get help, often in their non-support group. In addition, there will be within a support group often only a single child with Down syndrome and autism. Hence affected by this problem, the other hardly. However, it is absolutely necessary that can take place in affected families experience. Although Down syndrome is present, it may also be useful to make contact with a support group for parents of autistic children. But even here there is a risk that the parents do not feel really comfortable because of such a group is missing in the understanding of Down syndrome
first To understand behavioral aspects
the child really helps a diagnosis Down syndrome and autism alone little further. It is even more complicated because there is hardly any information on this diagnosis and you are therefore not know what medical and therapeutic treatments in question. To determine which behaviors occur most frequently in Down syndrome and autism, we have conducted various studies, which were control groups (for sex and age, Down syndrome and autism and Down syndrome only) were compared. In this study, we collected various data: first, the results we got from the ABC test, we need a detailed description of the development of the child and a detailed report on the child's behavior. From this study, we could deduce the following. Children with Down syndrome and autism show more often:
- development setbacks , including loss of language and social skills,
- poor communication skills (had many children have no meaningful language use also no sign),
- self-injurious or destructive behavior (such as skin picking, bite, cut on his head or hit his head)
- repetitive motor mannerisms (teeth grinding, rapid movements of hands, swings to the body),
- unusual Noisy (hum , buzzing or hoarse lute),
- unusual sensitivity to external stimuli (staring at lights, sensitivity to certain sounds),
- problems with food intake (refusal or strong preference for certain foods )
- excessive anxiety, or even f ehlende fear of real dangers, irritability, great unease over changes in the everyday environment , hyperactivity, sleep problems
More on much, that:
- children with Down syndrome and autism clearly more points in all five areas (perception, interpersonal relationships, dealing with their own bodies and objects, use of language and social skills) of the ABC tests than children with Down syndrome only, (??????????? ? no idea)
- children with Down syndrome and autism less deficits showed when taking social contacts than children who only had autism,
- children with Down syndrome and autism more stereotyped body movements, and preoccupation with objects than did children with only autism .
- children with Down syndrome and autism more points in all five areas of the ABC test as severely mentally disabled children,
- children with Down syndrome who are severely mentally impaired, do not necessarily have autism. (Could also be including children with Down syndrome)
These studies have shown me that children are to be distinguished clearly with Down syndrome and autism from the 'typical' children with Down syndrome and even children with severe intellectual disability. And although it is true that autistic traits and a low level of development often occur together, it is not correct to say that autistic behaviors associated with a low cognitive level.
second Associated health problems
the question arises whether it also is a difference in the health status of children with Down syndrome and those with Down syndrome and autism. Also, we have pursued in our study and have the following distinctive features found but must be regarded only as preliminary results, as the number of the children is not yet sufficient to make definitive statements.
children with Down syndrome and autism are more likely:
- congenital heart defects and problems in the gastro-intestinal tract,
- neurological abnormalities (convulsions, swallowing problems ( this only when drinking ) and delay in motor Development, are often extremely hypotonic),
- eye problems, respiratory problems
- (pneumonia and sleep apnea) ,
- total, more medical complications.
diagnose Down syndrome and autism. What to do?
If, after a long fruitless search for an explanation for the behavior of the child finally understands the diagnosis, this can initially be of advantage. But this new disability autism raises new questions . From a medical point of view it is important to consider whether the child should get drugs that are mainly in older children because of specific behavioral problems help can. Especially when the learning behavior and the social acceptance of children affected. Although there is neither a cure for the syndrome Dowhn yet for autism, certain behaviors are still treated. These include:
- hyperactivity and attention problems
- irritability, and fears, sleep disturbances,
- aggressive or destructive behavior (can sometimes be reduced),
- self-injurious behavior (can sometimes be reduced)
with all these efforts, they do so as much as possible to provide for the child, you should not the good of the family lose sight of. You should be aware that you can only put a certain time and energy into this 'project'. There will be good and bad times and if you have no refueling, is a 'burn-out syndrome' inevitable. There are for families in this situation actually a burden. Therefore, you should try to difficulties not 'put away', but always remain in dialogue with each other as parents and family and be in regular contact with experts. The only way to handle the situation.
Summary
In fact, little is known about children with Down syndrome in autistic behaviors . Show It is important for parents, as much as possible about Down syndrome and autism experience and knowledge to teach others. Families should try to build a team of doctors, therapists and teachers who are interested in working with their child, provide him the best possible conditions for a good development. Science has more reasons and early diagnostics research. Also in the development of the brain could be found references to what is typical for Down syndrome and autism. The potential benefits of different therapies must be investigated and documented. One should be aware of all this, that it is an extremely complex area of trade and therefore progress can be slow scoring. In any case, children with Down syndrome and autism should be and their families have our full support and understanding.
So you see, I am working very intensively with the topic again .. and if you look at my red labeled .. It is probably no longer ignore the jerry DIFFERENT IS !!!!!!!!! figure it is not why the Doctors are not easy .. It really upsets me.. (
Our psychologist also said the talk jerrys feelings against it and his social skills .. (so great is now not even better .. than autistic people only .. But worse than viiiiiiiel ONLY down syndrome) .. but if you look at the level dochmal look .. is the scale of 8:2 figuratively ne ...
and all the physical characteristics of Down syndrome Jerry has not .. so what? does that mean he has not the down-syndrome??
love thoughtful greetings
