Monday 6 March 2017

Autism Spectrum Disorder, what is it?

I have written a blog previously titled “What does autism look like” and I feel it is the right time to write one about what Autism is.

There are so many stereotypes about what Autism is. If you ask a lay person who has very little to do with the Autism world what they think Autism is, you’ll probably hear an answer somewhere along the lines of “someone sitting in a corner of a room, rocking and banging their head against the wall.”

I have heard this description of Autism, and scarily only just recently.

Autism can be this but Autism can also look like many other things.

As the saying goes: if you’ve met one person with Autism, you’ve met one person with Autism. No two people on the Autism Spectrum are like. Autism presents in many many different ways.

I honestly don't believe that many people can honestly and truthfully say that they have truly understood autism until they were directly effected by it. Be it parents, teachers, carers, educators, therapists - what they know at the start of an autism journey dramatically increases along the journey.

I'm not professing to being an expert on autism, however I am an expert on my children, both have autism and as a consequence I have had to learn a lot in a very short period of time. What I can do is pass on the knowledge that I have gained so far on our journey.

What is Autism Spectrum Disorder?

If you look up the definition of Autism you will find this -

Autism – a mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Autism Spectrum Disorder is a lifelong neurological developmental condition and is characterized by difficulties in communication, social interaction and restricted or repetitive behaviours and interests. Autism can affect the way an individual relates to their environment and also how they interact with other people.

The symptoms of Autism quite often presents in early childhood, however they can also present later in life. As I have said previously girls generally present differently to boys and as such girls can be diagnosed at a much older age.

As the term “spectrum” suggests, individuals with autism vary in how their traits present as well as the degree in which they are affected. Some individuals may be able to live relatively “normal” lives while for other individuals autism can be a very disabling condition and they may require ongoing specialist support.

For children who are diagnosed, early intervention can have tremendous results in improving their quality of life and assists them to live life to their full potential. L has made the most amazing progress since February last year and much of his progress is due to the early intervention service that he attends once a week

How is Autism Diagnosed?

To receive a diagnosis of Autism, an individual must go through a series of assessments based on a checklist in the Diagnostic and Statistical Manual of Mental Disorders, or the DSM. In Western Australia, a child needs three separate diagnosis from three separate medical professionals - a Pediatrician, a speech therapist and a psychologist - and all three must agree with each other. If one disagrees, a diagnosis of Autism will not be provided. This assessment process can be and quite often is a very long, tiring emotional journey just to get the diagnosis.

Autism is diagnosed using a behavioural criterion. At present there is no medical testing available but it is hoped that with the advances in the world wide autism research that one day in the future, this will be available.

The first two versions of the DSM indicated that children who presented with Autism traits should be classified as having ‘childhood schizophrenia.’ I can imagine that quite a number of individuals would have been institutionalized after receiving this diagnosis. Oh how time has changed.

The DSM-3 changed the criteria and an individual presenting with autism traits would be have been categorized into one of three disorders – Autistic Disorder, Asperger’s Syndrome or Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS.)

In 2013, the most recent edition of the manual was published, the DSM-5, and the criteria was once again changed. All three of the previous categories were combined into one and it is now called Autism Spectrum Disorder or ASD. An individual is given a diagnosis based on three levels - Level 1 being equivalent to High Functioning Autism and Level 3 on the lower end of the scale. An individual can be diagnosed with purely one level or a combination of levels depending on the severity of their traits.

How many people have Autism?

From the 2012 ABS Autism in Australia, the report states that 0.5 percent of the population, or 115,400 people, have been diagnosed with Autism. The report also states that boys are more than four times likely to be diagnosed than girls.

It was once thought that Autism was a male condition but as more and more research is being done on Autism, professionals are beginning to realise that girls quite often present differently to boys and as such many girls have been misdiagnosed or missed all together. In terms of the medical world, this is quite a new development and not all professionals agree or are aware of this and as such there are still girls being misdiagnosed.

Girls are better are masking their traits as they are able to copy or mimic the actions of their peers. Boys, generally, are not able to do this. As a result many girls are not diagnosed until they reach the age of 6 or 7 or even until their reach their teenage years when social interactions come into play.

What is Autism caused by?

While there is a lot of research being done, and research that has been done, around the world into Autism, there is still no known single cause of Autism. Many scientists, medical professionals and individuals with Autism are doing research on Autism to try and understand the disorder. There are many different angles being taken with the research as well to find out as much about the disorder as we can.

One thought is that Autism could be caused by genetic factors but which genes are responsible are unknown. Another thought is that environmental factors could possibly play a role in an individual developing Autism. It is also believed that Autism occurs as a result of changes to the development and growth of the brain.

It is generally agreed by the researchers that Autism is more likely to have multiple causes that all work together and it is combinations of these various causes that produce the different ways in which Autism presents itself. This makes a lot of sense!

Some medical professionals believe that there is an increased chance of having another child on the spectrum if there is already a child in the family who has a diagnosis.

You cannot catch Autism. Period. Not going to say any more on this.

I DO NOT believe that Autism is caused by vaccinations. L was a different baby from birth. Even though we only started noticing O’s traits in the last 12 months, it has become apparent that O was also presenting traits from birth, her traits just didn’t stand out.

I’ve had the vaccination chat with our pediatrician and the way that he explained it was that quite often autism doesn’t start being overly obvious until around the 18 month old stage which just happens to coincide with the 18 month year old needles. So some parents then make a connection between vaccinations and Autism.

This is my opinion. If your opinion differs to mine, not a problem. Freedom of speech, it’s a great thing!

What does Autism look like?

As there is no physical marker for Autism, individuals generally look no different to others. Autism doesn’t look like one thing! When people say “oh are you sure, he doesn’t look autistic” I generally ask them what does autism look like? And then they um and ah before saying “I’m not sure actually!"

It is called Autism Spectrum Disorder for a reason and it as wide as it is long. Every individual with autism is unique, the same as all of us. This as you can imagine creates a slight problem when it comes to trying to explain autism.

So what can autism can look like?
  • An individual may have challenges with verbal and non-verbal communication as well as interactions with others. This is turn affects how they experience and participate in the world around them. Some individuals may have no interest what so ever in their peers or even their immediate family. Individuals may have speech and language difficulties. Individuals may have difficulty in understanding and following simple instructions. Some may engage in echolalia which means that they mimic or echo words or phrases that they hear.
  • Some individuals may be completely non-verbal and use sounds to communicate.
  • Individuals may have unusual sensory interests, they may sniff, feel or taste unusual objects. They may have sensory sensitivities to sounds, textures, smells and so on which results in unusual reactions to what they see, hear, smell, taste and/or touch. They may only want to eat foods of a particular texture. Some may be sensory seekers, some may be sensory avoiders.
  • Individuals may have an intellectual impairment or a learning difficult. Some individuals may have a below average intelligence, while others may be on par with their peers or above average even.
  • Individuals may develop repetitive behaviours such as rocking, flapping, bouncing or moving their bodies in different ways and they do this over and over again. This is known as stimming and it assists the individual to cope with the world around them. Stimming can assist them to regulate their sensory input. Individuals may have different stims for their different emotions. When L is happy he will bounce on the spot, when he is anxious he starts to hit himself in the head.
  • Individuals may have a preference to specific routines and will have an intense dislike to changes in those routines. Even the slightest change can cause a huge amount of distress.
  • Individuals may have a strong interest or obsession on one topic or subject. L's obsession is superheroes - everything he does is based on superheroes. His clothes, his games, his toys, the shows that he will watch. Superheroes are the one topic that he will always talk about the anyone.
  • Individuals, especially children, will line objects up or group objects. This may not make a lot of sense to outsiders, but they make complete sense to them. L likes to line objects, O groups objects. This in itself can make life very interesting!
  • Individuals may have sleep issues and not just a slight case of insomnia. We're talking they sleep when they need to not when others need them to sleep. We've found that since taking Melatonin, both L and O's sleep patterns have improved however if L is not tired the melatonin will not keep him asleep. And fortunately for L, he can manage quite well on only 5 hours sleep a night! I can't say the same for myself!
  • Individuals may have anxiety issues. O suffers from severe anxiety and it can affect her any time of the day or night. O is gradually learning the skills that she needs to self manage her anxiety.
  • Individuals may have difficulties with their fine and/or gross motor skills. L has brilliant gross motor skills however his fine motor skills weren't the best. O is the opposite, her fine motor skills are fantastic and always have been.
  • Children quite often will walk on their tippy toes, it is called toe walking!
  • Individuals may have trouble making and keeping eye contact with others.
  • Individuals may have difficulties in expressing emotion, reading others emotions and showing empathy towards others. Individuals may have regular outbursts as they are unable to regulate their own emotions.
  • Individuals can be very, very literal thinkers.
There are many, many more indicators of autism, far too many to list in fact. Some individuals present with all indicators, some may only present with a few.

It is important to remember that some of these indicators can be present in all children as they can be part of the different stages of child development. What is important to know is that when the behaviour is ongoing, it is probably a good idea to get the child seen by a medical professional. Generally all children will toe walk as babies when they are learning to walk, however it is when they continue to toe walk as toddlers and children that it can become an issue.

Is there a cure?

There is no cure for autism. There is no magic pill that can be taken. Autism does not go away. It is present 24/7 and as I have stated previously, autism is lifelong.

For some individuals autism can be debilitating, it can have huge impacts on all facets of their life. Parents have to consider making arrangements for the future to ensure that their children are well looked after. I can't imagine how this would feel.

For others, therapy can make a huge difference to the quality of their life and it means that they are able to live a "normal" life as an independent adult.

What we have found is that L's autism traits are becoming easier to manage with the therapy that he receives. People who have never met L before have commented that they would not have known that he had autism unless they were told.

What needs to be remembered is that autistic children grow into autistic adults.

The more awareness and acceptance that there is in society about autism, the easier it is going to be in the future for these children! There does need to be better knowledge and understanding overall.

More knowledge and understanding means that there would be a better awareness of autism and as such a higher acceptance and inclusion of individuals with autism.

Awareness, acceptance and inclusion - three little words that mean so much to those on the autism journey!

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  1. After reading this post, I feel that I have just started to understand a little about an extremely complex condition that is simply misunderstood by many. This has really given me such a greater in-depth understanding from a person who lives this each day and I admire the skills and knowledge you have obtained in order to help educate people like me on such a complicated subject.

    1. Thank you and I am glad that I can assist people to understand ASD.

  2. I agree with this wholeheartedly! You have some amazing points here, and everyone needs to read this.

  3. My husband as Asperger's, not straight Autism, so he is still very high functioning... But I do know some people with Autism, and I find it ridiculous that some people don't think it to be an issue or that it's made up... Drives me crazy!

    1. I am glad that I am not the only one who has encountered these issues.

  4. I did have the same experience as I saw my girl regress after she had her MMR. That was 2 years old (24 months). Thank God she is much better now. We really don't know what is the cause too..and I really can't blame vaccine. Because one my sister's son has an autism as well. I do believe genetic play the biggest role here.

  5. Thank you so much for sharing this post. It's so important to talk more about mental illness to teach the public more about it.

  6. This is such an amazing and informative article. Thank you so much for speaking up and sharing it.

  7. People find it awkward to go to a doctor to evaluate their mental state. Thanks for sharing

    1. Unfortunately it still seems to be a taboo subject and this really does need to change.

  8. Thank you for taking your time and writing such a valuable article. Autism is such a difficult thing to deal with..your tips will really help the patient as well as the family to deal with it better

  9. I salute you, it must be really hard yet fulfilling to have kids with special needs.

    1. It can be very difficult but you are right it is fulfilling at the same time.

  10. Good on you on writing this and Morep eople should be aware of this disorder. xx

  11. This is a topic many avoid, your post reminded me of an Bollywood movie which was made on the same subject, however my friend your post touched me heart. It informed of so many things I did not know about. Thank you for sharing this, I will be sharing it ahead :)

  12. Such a well written post about an important topic, good on you for writing this and bringing awareness!

  13. Very informative post, thank you! During my teaching days I had autistic students and learned much about educating based off the needs of individual students, we cannot assume all are the same.

    1. Thank you. It is one of pet hates when people say "oh I know about autism, I've worked with an autistic individual previously!"


I would love to hear your thoughts on my blog. I do read all the comments that are posted. Thanks so much for stopping by. Jen xx