Important Notice
In this section we try to give an insight into Autism. This is not exhaustive and should not be used for any form of assessment. If you have concerns regarding your child please seek professional help and advise.
Contents
What is Autism?
Autism (sometimes called classical autism) is the most common condition in a group of developmental disorders known as the autism spectrum disorders (ASDs).
Autism is characterised by impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or severely limited activities and interests.
Other ASDs include Asperger Syndrome, Rett Syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder not otherwise specified (usually referred to as PDD-NOS). Experts estimate that three to six children out of every 1,000 will have autism. Males are four times more likely to have autism than females.
Autism is a biological disorder of the brain that impairs communication and social skills. It encompasses a broad spectrum of disorders that may range from mild to severe. Autistics have been described as being in their own world. Many high functioning autistics describe two worlds; their world and the outside world. Many autistics describe their experience as "thinking in pictures", to quote Dr. Temple Grandin. There are serious sensory challenges that accompany autism, and some say are the source of autism, that must be understood to fully comprehend the disorder.
Some of the markers are as follows:
- Absence or delay of speech and language
- Repetition of words (echolalia) in place of a normal verbal communication.
- Hand leading to communicate in place of verbal requests.
- Absence of verbal communication.
Difficulty relating to other children and adults:
- Absence of eye contact. (When directly in front of the child, they may look in every direction, except at the individual in from of them)
- Apparent aloofness
- Lack of interest in other children and what the other children are doing.
- Lack of response to verbal requests.
- No response when name is called.
- Avoidance of physical contact (even with parents and siblings).
- Indifference to others in distress or pain.
Odd Behaviours:
- Self-stimulation, spinning, rocking, hand flapping, etc
- Inappropriate laughter or tantrums for no apparent reason
- Inappropriate attachment to objects
- Obsessive compulsive behaviours i.e. lining up objects
- Repetitive odd play for extended periods of time. Example: stacking blocks for a half hour at a time
- Insistence on routine and sameness
- Difficulty dealing with interruption of routine schedule and change
- Possible self injurious behavior or aggressive behavior toward others
Sensory Challenges:
Hyper (over) or Hypo (under) sensitivity of the five senses (See the discussion below)
Abnormal responses to the senses
A lack of response to pain or an overreaction to something seemingly minor such as a door closing
What are some common signs of autism ?
There are three distinctive behaviours that characterize autism. Autistic children have difficulties with social interaction, problems with verbal and nonverbal communication, and repetitive behaviours or narrow, obsessive interests.
These behaviours can range in impact from mild to disabling. The hallmark feature of autism is impaired social interaction. Parents are usually the first to notice symptoms of autism in their child. As early as infancy, a baby with autism may be unresponsive to people or focus intently on one item to the exclusion of others for long periods of time. A child with autism may appear to develop normallyand then withdraw and become indifferent to social engagement. Children with autism may fail to respond to their name and often avoid ye contact with other people. They have difficulty interpreting what others are thinking or feeling because they cant understand social cues, such as tone of voice or facial expressions, and dont watch other peoples faces for clues about appropriate behaviour. They lack empathy.
Many children with autism engage in repetitive movements such as rocking and twirling, or in self-abusive behaviour such as biting or head-banging. They also tend to start speaking later than other children and may refer to themselves by name instead of I or me. Children with autism dont know how to play interactively with other children. Some speak in a sing-song voice about a narrow range of favourite topics, with little regard for the interests of the person to whom they are speaking. Many children with autism have a reduced sensitivity to pain, but are abnormally sensitive to sound, touch, or other sensory stimulation. These unusual reactions may contribute to behavioural symptoms such as a resistance to being cuddled or hugged.
How Is Autism Diagnosed ?
Autism varies widely in its severity and symptoms and may go unrecognised, especially in mildly affected children or when it is masked by more debilitating handicaps. Doctors rely on a core group of behaviours to alert them to the possibility of a diagnosis of autism.
These behaviours are:
- Impaired ability to make friends with peers impaired ability to initiate or sustain a conversation with others
- Absence or impairment of imaginative and social play
- Stereotyped, repetitive, or unusual use of language
- Restricted patterns of interest that are abnormal in intensity or focus
- Preoccupation with certain objects or subjects
- Inflexible adherence to specific routines or rituals
Doctors will often use a questionnaire or other screening instrument to gather information about a childs development and behaviour. Some screening instruments rely solely on parent observations; others rely on a combination of parent and doctor observations. If screening instruments indicate the possibility of autism, doctors will ask for a more comprehensive evaluation.
Autism is a complex disorder. A comprehensive evaluation requires a multidisciplinary team including a psychologist, neurologist, psychiatrist, speech therapist, and other professionals who diagnose children with ASDs. The team members will conduct a thorough neurological assessment and in-depth cognitive and language testing. Because hearing problems can cause behaviours that could be mistaken for autism, children with delayed speech development should also have their hearing tested. After a thorough evaluation, the team usually meets with parents to explain the results of the evaluation and present the diagnosis.
Children with some symptoms of autism, but not enough to be diagnosed with classical autism, are often diagnosed with PDD-NOS. Children with autistic behaviours but well-developed language skills are often diagnosed with Asperger syndrome. Children who develop normally and then suddenly deteriorate between the ages of 3 to 10 years and show marked autistic behaviours may be diagnosed with childhood disintegrative disorder. Girls with autistic symptoms may be suffering from Rett Syndrome, a sex-linked genetic disorder characterized by social withdrawal, regressed language skills, and hand wringing.
What Causes Autism ?
Scientists are not certain what causes autism, but its likely that both genetics and environment play a role. Researchers have identified a number of genes associated with the disorder. Studies of people with autism have found irregularities in several regions of the brain. Other studies suggest that people with autism have abnormal levels of serotonin or other neurotransmitters in the brain. These abnormalities suggest that autism could result from the disruption of normal brain development early in fetal development caused by defects in genes that control brain growth and that regulate how neurons communicate with each other. While these findings are intriguing, they are preliminary and require further study. The theory that parental practices are responsible for autism has now been disproved.
What role does inheritance play ?
Recent studies strongly suggest that some people have a genetic predisposition to autism. In families with one autistic child, the risk of having a second child with the disorder is approximately 5 percent, or one in 20. This is greater than the risk for the general population. Researchers are looking for clues about which genes contribute to this increased susceptibility. In some cases, parents and other relatives of an autistic child show mild impairments in social and communicative skills or engage in repetitive behaviours. Evidence also suggests that some emotional disorders, such as manic depression, occur more frequently than average in the families of people with autism.
Do symptoms of autism change over time ?
For many children, autism symptoms improve with treatment and with age. Some children with autism grow up to lead normal or near-normal lives. Children whose language skills regress early in life, usually before the age of 3, appear to be at risk of developing epilepsy or seizure-like brain activity. During adolescence, some children with autism may become depressed or experience behavioural problems. Parents of these children should be ready to adjust treatment for their child as needed.
How Is Autism Treated ?
There is no cure for autism. Therapies and behavioural interventions are designed to remedy specific symptoms and can bring about substantial improvement. The ideal treatment plan coordinates therapies and interventions that target the core symptoms of autism: impaired social interaction, problems with verbal and nonverbal communication, and obsessive or repetitive routines and interests. Most professionals agree that the earlier the intervention, the better.
Educational/Behavioural Interventions:
Therapists use highly structured and intensive skill-oriented training sessions to help children develop social and language skills. Family counselling for the parents and siblings of children with autism often helps families cope with the particular challenges of living with an autistic child.
Other therapies:
There are a number of controversial therapies or interventions available for autistic children, but few, if any, are supported by scientific studies. Parents should use caution before adopting any of these treatments.
What research is being done ?
The National Institute of Neurological Disorders and Stroke (NINDS) is one of the federal governments leading supporters of biomedical research on brain and nervous system disorders. The NINDS conducts research in its laboratories at the National Institutes of Health in Bethesda, Maryland , and also awards grants to support research at universities and other facilities.
As part of the Childrens Health Act of 2000, the NINDS and three sister institutes have formed the NIH Autism Coordinating Committee to expand, intensify, and coordinate NIH’s autism research. Eight dedicated research centres across the country have been established as Centres of Excellence in Autism Research to bring together researchers and the resources they need. The Centres are conducting basic and clinical research, including investigations into causes, diagnosis, early detection, prevention, and treatment, such as the studies highlighted below:
Investigators are using animal models to study how the neurotransmitter serotonin establishes connections between neurons in hopes of discovering why these connections are impaired in autism. Researchers are testing a computer-assisted program that would help autistic children interpret facial expressions. A brain imaging study is investigating areas of the brain that are active during obsessive/repetitive behaviours in adults and very young children with autism.
Other imaging studies are searching for brain abnormalities that could cause impaired social communication in children with autism.
Clinical studies are testing the effectiveness of a program that combines parent training and medication to reduce the disruptive behaviour of children with autism and other ASDs.
PRACTICAL TIPS FOR YOU AND YOUR FAMILY TO DEAL WITH AUTISM
A. PARENTAL SURVIVAL - PRACTICAL HINTS.
1.Under the Irish Constitution the family unit is recognised as the best enviroment to bring up a child. The constitution also recognises that the parent is the primary educator of their child. These two points should empower all parents and allow them to be at the centre of all decisions related to their autistic child/children.
2. Learn to be the best advoacte that you can for your child. Find out what services are available to you locally. These service provision 'system' in Ireland is not user friendly. It expects all parents to be experts and does not volunteer information to you. You therefore need to be informed. Fellow parents are the best source of information. Get to know your local autistic group. Some are very good, others are not very well developed. Remember some groups are very 'service' rooted, others are set up and act as support group/s for like minded parents. If one does not suit , move on to another, or use several.
3. Always remember your child is unique. Each child develops slightly differently. Each child starts from a slightly different base. Focus on what your child can do. Take pride and appreciate every small accomplishment your child makes. Try not to make comparisons with a typically developing child. Cherish and love them for who they are rather than what society or fellow parents/famly members think they should be.
4. Do not let autism consume your life. It is all to easy for a parent or parents to let autism take over every waking hour of their life. When you first get the diagnosis it is natural that one tries to get as much information as possible and try to plan, or rather struggle/fight to get appropriate and adequate services. Remember if there are other children in the family they need some of your time as well. Remember , everyone in the family unit needs support and time.
5. All parents should try and have some semblance of an adult life. Make time and space for your partner. It is common , especially to begin with, for one parent not to accept that their child has a disability. It is also common for one parent to take over the planning of life of autistic child/children to the exclusion of other parent/partner. One can accomplish more working as a 'family team'.
6. Remember, as a parent you are allowed to have feelings to. Don't forget to talk about them. It's normal to have conflicting emotions about your autistic child. You can be angry and depressed. Accept that your fellow parent/partner can have different views on various issues related to autism. They to have to go through an emotional roller coaster. Try not to get mad with other parent/partner when it really is the autism that has you so upset and angry.
B. SIBLINGS AND AUTISM.
1. Learn to talk about autism with your friends. Be comfortable when you descibe the condition with others. Remember if you are comfortable with autism then your friends will be comfortable with it to. Learn to love and be proud of your autistic sister or brother.
2. It is all right to admit that sometimes you love your brother or sister , but sometimes they 'bug the hell out of you'. It is not a crime to sometimes say , 'why do I have to have an autistic brother or sister'. Conflicting emotions is normal and allowed.
3. Remember you can get angry with your autistic sibling, but that anger does not change the situation, it only makes you(sibling) feel unhappier.
4. Your parents have they same feelings as you sometimes about autism. They need your help and understanding too! Enjoy the good days you have with your autistic brother or sister and hold on those memories when the going gets hard.
5. You have a right to a childhood. Make friends and try to realsie that you are not reponsible for your autistic brother or sister all the time. You need your own space too.
6. Spend time with your mum and dad alone. Do things together as a family.
7. Having a family member with autism can often be very time consuming, and attention grabbing. You are important too.
C. THE EXTENDED FAMILY.
1. Grandparents and other extended family members need to have autism explained to them. They need to be comfortable with condition. If they feel comfortable with autism then son/daughter's family can feel comfortable taking to them about their worries and fears.
2. Extended family need to respect the decisions that parents of autistic child make.
3. Try not to compare grandchildren or cousins with autistic child. Remember that children with autism can be brought up to achieve their personal best.
4. Make time for autistic child.
5. Be supportive of parents of autistic child.
6. As children with autism like routines , find one thing that you can do together that is structured , even if it is going for a walk for ten minutes, playing in garden for ten minutes.
7. If you do not know what to do to help your daughter or son or cousin then ask!
8. Tell your son/daughter or cousin that they can talk to you whenever they want, and don't be judgemental.
Links
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- English company providing nannies and carers for babies, children and young adults with additional needs.
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Their Spring 2009 newsletter features information about autism.