Overview of autism 

There is a great deal of diversity on what autism is: a complex neurobiological condition, an illness, a gift, a personality type and more. Autism is a hard condition to describe as it covers such a wide range and the terminology of autism also can be bewildering.

Diagnosis and terminology has changed over the years. Today Autism, Asperger syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) together make up the autism spectrum disorders (ASD).

Today the diagnosis of autism is given in South Africa only by a medical professional such as a GP or psychiatrist, or a psychologist (clinical, counselling or educational). This means that many professionals who work with children, such as teachers, occupational therapists, speech therapists and others may not give a diagnosis, although their input may be invaluable.

Autism is not uncommon: it is estimated that nearly 1 in 68 births result in some form of autism (statistic from CDC, Atlanta, 2014). Autism is also 4 times more likely to be diagnosed in boys than girls, although it is not yet clear if this is due to increased diagnosis or other factors.

As it covers a wide spectrum of traits and behaviours it is difficult to describe to the layperson. Individuals with autism range from individuals with severe impairments, and who need extensive support for daily living, through to those who may not be obviously “autistic” to anyone except those close to them. The picture widens when  autistic savants such as “Rainman” are considered (savants, by the way, are rare!).

Every individual with autism is just that: an individual, with unique characteristics.

sunflower

Understanding Autism

Autism Spectrum Disorders: 10 Tips to Support Me

  1. I am first, foremost, and always a person, a student, a child, and I have autism. Do not confuse me with my condition. And, please, do not use the term in a negative or inconsiderate way. I deserve to be respected.
  2. I am an individual. Being autistic does not make me the same as other people with autism. Make an effort to know me as an individual, to understand my strengths, my weaknesses, and me. Ask me—and my friends and my family, if I cannot reply—about my dreams.
  3. I deserve services, just like all children. Services for me begin early. Autism is — or it will be, when recognised — a public health issue in many countries of the world. There are instruments to screen it. They should be applied in the framework of screening for other developmental difficulties and disabilities. If you start soon, my life will be different! And remember that about one quarter of my siblings will have autism or other problems. Help them; they are an important part of my life.
  4. I belong in the health care system, just like all children. Include me in regular health care. The health care system should adapt to me, limiting waiting times and ensuring that I understand what is to be done, by using, for example, easy-to-read materials, pictograms, technologic means, and so forth. Other patients also will benefit.
  5. I belong with other children. Do not separate me from them because you want to treat me, educate me or care for me. I can, and I should, be placed in regular schools and regular community settings, and special support should be provided to me in those places. I have something to teach other children and something to learn from them.
  6. I belong with my family. Plan with me for my future and my transitions. I am the one who should decide, and, when my ability to do so is limited, my family and friends will speak for me. No government agency can take the place of my family, and, please, make sure that our society values my family’s generosity when they support me on society’s behalf.
  7. I deserve the right to evidence-based services. These may not be convenient or easy but when I get them, I do better. Do not substitute my educational, health, and social support with medication. I may require medication, and I look forward to new developments in biological treatments, but you must be cautious in their use. Count on me for research ventures; get me involved, with all my rights protected. I also want to help others.
  8. I belong in society. Engage me in vocational training. I want to contribute. The services I need during my adult life should be guided by self-determination, relationships, and inclusion in all the activities of my community. Your goal must be to adapt the environment I have to face and modify settings and attitudes. It also will make our society better.
  9. I have human rights, and I face discrimination for many reasons. Many of us live in poverty with no community support system. Some of us are immigrants or minorities, including sexual minorities. Keep a gender perspective. Girls and women with autism are often at greater risk of violence, injury, or abuse.
  10. I belong in the world. I have a role to play. We, and my legal representatives, want to be involved in policy making, its development, and its evaluation. You need my help to know what should be done. Empower me. Remember my motto: nothing about me, without me.

(taken from: 10  tips to support me by J. Fuentes, reviewed, edited and endorsed by a self-support group of young people with autism in Southern Europe)

diagnosis

Definition of autism

The DSM-V takes nearly 1,000 words to define autism spectrum disorder.

Traditionally it is viewed as a complex developmental disability that typically appears during the first three years of life in the areas of social interaction, communication skills, behaviour and often sensory. The diagnosis is not given unless the individual needs support.

Generally, the individuals who come into contact with Autism Eastern Cape fall into two extremely broad groups: those who need more support, and those who need less.

Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities, known as the “triad of impairments”, or to put it more clinically:

  1. Impairments in social interaction;
  2. Impairments in communication;
  3. Restricted interests and repetitive behaviour.

    Often there is a fourth dimension: sensory issues and difficulties.

Characteristics of autism

Many signs or characteristics of autism are evident in the areas of speech or communication (verbal and non-verbal). Many of the signs or symptoms can  be seen between 2 and 6 years of age.

If you suspect that your child may be autistic, you should consult with your doctor and a psychologist before drawing your own conclusions. A doctor is important to rule out any other medical conditions and to get an initial clinical opinion but individual doctors do vary in their experience and knowledge of autism. Many different professional disciplines, that is, medical doctor, psychologist, occupational therapist, psychologist – all with specific training with autism – can help to piece the puzzle together.

In South Africa, only a medical doctor or a clinical psychologist may give the diagnosis, although OTs and other professionals are often extremely insightful in building up the picture.

Remember, though, that if you are the parent of a child with autism, you are the key piece in that jigsaw. If you would like to speak to someone, Autism Eastern Cape can put you in touch with other parents. Alternately, look on our RESOURCES page for names of professionals in the Nelson Mandela Bay area who may be able to assis.

Early signs of autism

Look out for these early signs  for autism in a young child:

  • No babbling by 11 months of age
  • No simple gestures by 12 months (for example, waving bye-bye)
  • No single words by 16 months
  • No two-word phrases by 24 months
  • No response when name is called, causing concern about hearing
  • Loss of any language or social skills at any age
  • Rarely making eye contact when interacting with people
  • Does not play peek-a-boo
  • Doesn’t point to show things he or she is interested in
  •  Rarely smiles socially
  •  More interested in looking at objects than at people’s faces
  • Prefers to play along
  • Doesn’t make attempts to get parent’s attention and doesn’t follow or look when someone is pointing at something
  • Seems to be in his or her “own world”
  • Odd or repetitive ways of moving fingers or hands
  • Oversensitive to certain textures, sounds or lights.
  • Lack of interests in toys, or plays with them in an unusual way (for example, lining up, spinning, opening or closing parts rather than using the toy as a whole)
  • Compulsions or rituals
  • Preoccupations with unusual interests, such as light switches, doors, fans, wheels.

Note: this is not a diagnostic list, merely a guide to early signs so if you have concerns about your child’s development, consult a professional.

Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg

Paul Collins

Autism, is part of my child, it’s not everything he is. My child is so much more than a diagnosis

SL Coelho

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