How to Diagnose Asperger's Syndrome
The information contained here comes from personal experience and is a guide to those who suspect that their child may have an autistic spectrum disorder or A.S.D.
As someone who has had practical experience, gone through the pitfalls of diagnosis and living with a child with Asperger’s, I hope that this might help others with their journey.
Daniel is now a 16 year old adolescent with Asperger’s syndrome. He was formally diagnosed in 2004 at the age of 10. In my experience, the journey to diagnosis and living with a child with this condition is fraught with many difficulties. I will not kid you that the journey ahead is easy but the process is worthwhile in the long run.
Daniel’s example – the early years
Daniel always lacked attention. He always seemed to be in his own world. He was an imaginative child but didn’t appear to ‘play’ with his toys, as any other conventional child seemed to. He would be more inclined to break his toys and didn’t seem to want to explore them. I can remember trying to encourage him to play, as he didn’t seem well motivated in this.
When he started to talk, his first words were ‘car’ and not ‘dad’. He was a ‘good’ baby and toddler and rarely cried compared to others. However, it always seemed that he had to be taught and spoon-fed information. He never really explored activities or enquired and was slow to understand social norms. It was very obvious from an early age that Daniel lived in the here and now and could not predict the consequences of his actions.
Daniel was obsessed with certain things. He used to dress up as anything - Darth Vader, a policeman, a fireman. You might think that this is normal for a young child, but for Daniel it was an obsessional behaviour. Nothing else could distract him from this task. He used to spin, flicking his fingers and hum tunes that he associated with the uniform.
He also had little interaction with other children. He was a solitary child and, although, there were plenty of opportunities that I had provided for him, he rarely interacted. He was also very clumsy and would be unaware of the space he occupied. It transpired that Daniel had glue ear, so the initial thought was that this was the cause to his lack of attention or attention deficit.
It wasn’t until I was studying for my Honours in Psychology, that Asperger’s Syndrome was brought to my attention. The condition, I learned, was categorized under the umbrella known as Autistic Spectrum Disorders.
Asperger’s Syndrome Signs and Symptoms:
This list is not exclusive. Children may display a cross range of symptoms - some more or less. This is why Asperger’s Syndrome is classified as a ‘spectrum’ disorder because the child displays symptoms from aspects of the whole autistic spectrum. It is a disorder because the signs and symptoms deviate away from what the clinicians deem as the norm.
Children with Asperger’s Syndrome may have specific learning difficulties, for example, symptoms of:
- Dysphagia – a disability that affects movement, coordination and awareness of space. Seems clumsy.and disorganised.
- Obsessional Behaviour - for example, appearing stuck in a particular activity. In Daniel's case, he would escape in a world of dressing up. Essentially, seeking roles in subjects that immersed him. Being Darth Vader, a policeman or James Bond took him into an activity that he could relate to and construct situations that he could be in control of.
- Overly Organised - a contradiction, in Daniel's case because he had problems in sequencing. Some children with Asperger's Syndrome, however, are the opposite but similar to Daniel. They may display behaviour and become obsessive in organising the world around them. They may get upset if things are out of place, for example, and are fixed in their behaviour. The commonality, however, is that this is about controlling an environment that in their mind, is out of control. It feels safe in a world of confusing signals to act in this way and Daniel's coping mechanism was through imaginative play where he could control the outcome. In short, these children like to predict and control their environments.
- A Specialist Subject - Some children may excel in a particular talent. Daniel, for example, gets immerse in exploring through books the world. However, because he has problems with organisation, many projects are started but not seen through.
- Loneliness - .They find difficulties in socialisation which inevitably leads to social isolation. They find it hard to give eye contact, are vulnerable to scams because they don't understand social ques and can not decipher what people are actually saying to them by their body language. As a result, this can lead to outcomes that are both upsetting and confusing. They may show signs of violence which does not correspond to the true intention of others who are not on the spectrum. For ease, I term people as 'normals' because they find reading others as natural.
Summary By The National Autistic Society - The Official Line
‘It seems likely that most children with Asperger syndrome experience poor co-ordination and difficulties with fine motor control.’ The National Autistic Society
- Dysphasia – speech disorders, semantics and expression of language
- Attention Deficit Hyperactivity Disorder – the inability to keep to task, easily distracted and chaotic in their behaviour.
- A child with this form of autism will have an I.Q. (Intelligence Quotient) as average and above. This is the high functioning aspect of AS.
- They may find social communication difficult. Body language, social queues and knowing when to respond verbally in discussions (how to intervene, initiate and interact in a social context). They may take things literally and find jokes hard to understand. For example a saying like ‘one man’s meat is another man’s poison’ for someone with Asperger’s is a very bizarre notion.
- They find socialising difficult. They have to learn to interact with others whereas most people take this for granted – this is natural for most but unnatural for AS. Establishing and maintaining friendships is hard. They are able enough to know they are different so get frustrated and anxious.
- They may have difficulties in ‘reading’ other people – their motives, their responses and make predictions based on their actions.
- They may be limited in their range of imaginative activities. As a result, whatever their interest may lead to some obsessional behaviour. It is not unheard of if they are over particular about certain things. Daniel’s example of his obsession of uniforms demonstrates this.
- Most are not very adaptable to change. They like structure and feel safe in this. It might be because they feel chaotic, confused and disorganised. Control in a world that is confusing is comforting.
- They might have heightened sensitivity to the senses. Sounds might appear louder, smells may be more acute and touch may be annoying for example. Daniel has a habit of smelling drinking glasses and refuses to use these as he reports them having a strange smell. He, therefore, always drinks from a tap.
- They may appear disorganised, suffer short-term memory loss and be confused in new settings.
Diagnosis of Asperger's Syndrome
- It is unlikely that Asperger’s syndrome will be diagnosed before school age:
‘Some diagnosticians are clearly of the view that Asperger syndrome cannot be diagnosed before a child starts school.’ Source: Click ‘The National Autistic Society’ at the end of this article.
The reason for this is that it is thought that social skills may not have been fully developed at this point. This is because of the lack of exposure to social settings prior to starting school.
In the case of Daniel, despite an extensive assessment with the Occupational Therapy and Speech and Language Departments, it resulted in there not being enough evidence for diagnosis. Any diagnosis and difficulties he displayed appeared very ‘grey’. We were, therefore, advised to wait.
Daniel was also suffering from deafness due to his glue ear and this confused matters further as it could have had an impact in delayed development. Daniel’s example, therefore, exemplifies that diagnosis.
- Boys are more likely to have Asperger’s Syndrome than girls.
There is a new train of thought that boys are easier to diagnose than girls. It is still generally thought of as more of a boy’s condition, however, there are resources out there that can help from the likes of Tony Attwood, Rudy Simone and Shana Nichols - all of which are highly recommended reading.
There are lots of problems associated with diagnosis. I was lucky to have been studying Psychology when Daniel’s difficulties finally hit me. I, essentially, had diagnosed him initially just by being armed with the facts. If you are reading this, you either have an interest in this subject or you may have some concerns over a loved one. Whatever the reason, you are arming yourself with essential information. It is important, therefore, to get as much information as you can. Make notes and correlate what you know of your child’s behaviour with the information you have gathered.
This is a good step for empowering yourself before you visit your Doctor and it will show him/she that you have been concerned enough to have done your homework. Once you have convinced the Doctor, request a referral to an Asperger’s Syndrome specialist. This might be a paediatric, psychiatrist or clinical psychologist. I was very lucky; I managed to get the support of my Doctor who referred Daniel to a speech and language therapist and a clinical psychologist.
This was because, at the time, Daniel had further complications with glue ear and I had a fight on my hands with his school – they didn’t understand his needs. They thought he was a bad boy who needed a behaviourist to develop behaviour modification programmes. Despite his later diagnosis, they still did not accept this so, get the Doctor to make a referral to various agencies, predominantly a paediatric, psychiatrist or clinical psychologists. A team on your side can help. If you still have problems, take the private option and pay for an assessment.
On-going support - Ask for more!
Daniel has had on-going support from the clinical psychologist. The diagnosis has helped with him gain additional support at his secondary school and has helped professionals understand how Daniel operates. It has saved him from being permanently excluded from school. Daniel’s behaviour hasn’t been acceptable because he has problems with social interaction.
This has led to being bullied but also bullying because he just doesn’t ‘get it!’ The frustration that he has can lead to aggression because that is what he sees in others. Again, problems in perceiving and reading others.
In The Words of The Specialist...
Diagnosis – is it worth it?
In my experience it is. Daniel has additional government funding in order to help him over come his condition. It gives him an understanding into who he is and helps him to see Asperger’s in a positive light.
However, labelling someone may be deemed as disabling in the social world, but without the label he is without the help. What you need to ask yourself is which is the better out of the two evils? Going through life, lonely and scared or an awareness and understanding of your difficulties?
Being armed with education and skills to develop coping mechanisms within a very confusing world is the payoff for a label in a prejudice world. Whatever way you look at it, an AS child will always appear different within this prejudice world with or without a label!
© This work is covered under Creative Commons License
© 2009 shazwellyn