Living with Autism as a Child

When a child has recently been diagnosed as being autistic, most of the other family members are in a state of shock; they are left feeling baffled, overwhelmed, and angry.
Learning about the condition always helps ease the fear of the unknown and lessens the confusion. While the autistic person needs help, tools, and support, so do the parents and/or siblings.

Managing an autistic child can be extremely difficult and tiring at times, and to manage well, strategies need to be put in place as soon as possible to deal with the disorder. It can make the difference between coping, and feeling overwhelmed.

The strategies don't need to be difficult or complex. The "job" of the strategy is to ensure the safety, security and comfort of your child, so that he or she can grow and develop in a positive environment. (Please see "Strategies for coping with an autistic child" below)

We are all well aware by now that not even the "experts" know exactly what causes autism, but far too often, in the past, people unfairly blamed parenting practices. This, of course, only added to an already heavy burden of guilt and shame felt by parents of autistic children.
Research has confirmed that it is a combination of genetic and environmental factors that actually causes autism. Scientists have been looking into environmental triggers, including the affect of certain viruses, although a number of research studies have strongly discounted a link between vaccinations and autism.
Does my child have autism?

Here is a short reminder list on what to look for regarding autism with your child:
  • Lack of, or delay in, spoken language
  • Repetitive use of language and mannerisms (flapping of hands, twirling, or shaking things)
  • Little or no eye contact with others (including parents)
  • Lack of make-believe spontaneous play
  • Heavy focus on particular objects, or parts thereof
  • Narrow range of activities and interests

Parents usually instinctively know best. When they feel there is something wrong with their child, there usually is something wrong with their child.

You have taken your child to a doctor, a pediatrician, etc., and he/she tells you your child is just a little slow developing, you are worrying too much, and yet you still feel there is something wrong -- what do you do?

Go to another doctor or developmental specialist, and get a second opinion, a second review and, if necessary, a third opinion, until you feel sure that a correct diagnosis has been reached.
Why us?

"Why us?" or "Why me?" have been popping up as questions for years when something unfortunate occurs.

With the increasing number of children being diagnosed with autism, however, one could expect to hear: "Why not me?"

The discovery that a child has an ASD can be more than overwhelming to a parent and the family – it can be catastrophic. Some may have had suspicions for months, even years, while for others the diagnosis comes as a complete shock. Whatever the circumstances, what always accompanies the diagnosis and the flood of information is: "What do we do now?"

The great news is that there have been many positive changes since the days, just a generation ago, when people diagnosed with autism were placed in institutions. Today, children (and adults) on the autism spectrum enjoy a range of appropriate services, training, and support that helps them grow and flourish – each in their own unique and individual way.

Early intervention – birth until 2 to 3 years
Want to learn more? Take an online course in Autism.

People have queried why there is such an emphasis on early intervention (delivery of services from birth to the age of 3), with the relevance of the intervention being regularly questioned. However, it has been backed by research that has clearly shown the dramatic impact in reducing the symptoms of autism spectrum disorders.
The plain facts are that intensive early treatment yields a tremendous amount of progress in children by the time they enter kindergarten – which often reduces the need for intensive and costly support.
Regular follow-up assessments

Shortly after the assessment process, the professionals who conducted it meet with the parents/caregivers to discuss the findings.

Parents must find out why/how the particular diagnosis was made for their child; ask questions until you are given the full story. Why? Because it's only when a complete understanding is obtained, that the parents are able to do all they can to ensure that the child rises to the level he/she deserves. Questions help you to help your own child.

If you are happy with the diagnosis and the specialist, you can move forward with the following stages of treatment.
Right treatment plan + love + support = a child that learns, grows, and thrives

The main goals of any treatment are to decrease the severity of symptoms, reduce any family distress, and increase the diagnosed child's quality of life, via improvement of practical living skills and independence.
While there is no known cure for autism, there are a range of treatment and education options that help reduce many of the challenges associated with the disorder.

Intensive and continuing special education programs and behavior therapies early in life can help children acquire self-care, social, and work skills.

Interventions help to lessen disruptive behavior, and education teaches self-help skills that develop greater independence. Just as there is no one symptom or behavior that identifies individuals with ASD, there is no single treatment that is effective for all people on the spectrum.

The good news is that individuals can learn to function within the confines of ASD and use the positive aspects of their condition to their benefit, but treatment should begin as early as possible and be tailored to the child's unique needs, strengths and weaknesses.

Naturally parents are sometimes confused by all the different information they hear about treatments and educational programs. They need to try a number, individually or together, as an autistic child has more than one symptom, and he/she is going to need a number of different treatments.

Together with treatment and education, the autistic child and his immediate family require love and the support of others to have the best chance possible to learn, develop, and thrive.
The positive side

Of course, there is a positive side to everything if you look hard enough, with the right attitude and approach.

The positive side of autism are the lessons that the child, his/her parents, and other family members receive by stepping up to the challenge of autism. Many parents have said just that.

So, what do you do? How can you help your loved one interact on social occasions, without outright offending or embarrassing anyone?

You do it, of course, with patience, understanding, support and coaching. You need to teach autistic children by rote what comes naturally to typical children, as autistic children have to learn, guided by formal rules and rituals. In other words, the autistic child will need to practice social interactions by using something similar to role-playing techniques.

Any instructions and guidelines you give the child need to include details about how to do the same task in different environments, (again something that quickly becomes intuitive to most typical children but doesn't to the autistic child). In other words, you don't do something in the same way at a restaurant that you do it at home, or you don't conduct yourself in the same way at a football match that you may do at school, and so on.

Without coaching and advance warning, many autistic people would have real problems with identifying the difference in social norms. Okay, it may seem to you that your child will never be in a position to interact socially, as well as naturally and spontaneously. Given time, practice and patience, things will start to come to him or her more and more naturally and spontaneously, unless the child is severely afflicted.
Treatments for speech and language problems

No single type of repetitive behavior seems to be specific to autism – but only autism appears to have such an elevated pattern of the occurrence and severity of repetitive behavior.

The RBS-R (Repetitive Behavior Scale-Revised) categorizes a number of these forms of behavior as follows:

  • Stereotypy – purposeless movement, such as hand flapping and body rocking
  • Compulsive behavior – appears to follow rules, such as arranging objects in a certain way or pattern
  • Sameness – or resistance to change; insisting that furniture not be moved, or refusing to be interrupted
  • Ritualistic behavior – performance of daily tasks, the same way, at the same time.
  • Restricted behavior – behavior limited in focus or interest, such as a preoccupation with a single television program.
  • Self-injury – including movement that can injure the person (30 percent of children with ASD suffer from this at some point in time)
One interesting point regarding Repetition (echophenomena) is that, although usually characterized as meaningless, there is some evidence to support the theory that there can sometimes be communicative functions within the behavior.
Repetition patterning or behavior

What actually causes the speech and language problems in autism?

Experts generally believe that the many speech and language problems experienced by autistic people are caused by a complex variety of conditions that actually occur either before, during, or after birth – conditions that affect brain development. They interfere with a person's individual ability to interact with the world we live in.

As no one person with autism is the same, not displaying the same symptoms, neither should the communication goals for different children be the same.

For some autistic children, verbal communication is a realistic goal. For others, the goal would be gestured communication, and yet others would have the goal of being able to communicate via a symbol system, such as picture boards.

There are as many varied and differently-structured training and treatment modification programs as there are different communication goals. Some individuals respond better to in-home therapy (using real life situations as the teacher), whereas others respond only to highly structured behavior modification programs.
Research into communication difficulties and challenges

There was a time when the accepted sequence of literacy development said that a child first learned to listen, then speak, then read, and then write. This severely disadvantaged the autistic child. This accepted norm meant that children with autism were excluded from literacy learning experiences.

In light of the fact that these children have a scatter of strengths and needs, and often demonstrate very strong visual processing skills, it is essential to provide reading and writing/keyboarding experiences for them.

But where do we go from there? Families and practitioners are constantly and continually struggling with the question: "What is best for this child? "Which interventions will provide the best outcome?"

It is important for everyone to remember that autism is a spectrum disorder. Every child is a unique collage of strengths and needs. There is no "rubber stamp" best program for every child.