According to the Autism Spectrum Australia website, “Autism is a lifelong development condition characterised by difficulties in social interaction, communication, restricted and repetitive interests and behaviours and sensory sensitivities”.
My aim with this article is to provide you with a brief outline of how you can go about obtaining an assessment for your child, to either confirm or eliminate an ASD diagnosis. I’ll give you links to several websites for more background reading, as well as some great tips and resources for support through the very daunting and overwhelming assessment process.
The criteria used to make a diagnosis
In order for your child to receive an ASD label, their behaviours and habits need to meet specific criteria, which are written in the Diagnostic and Statistical Manual, version Five (DSM-V). The category of Autism Spectrum Disorders (ASDs) lists five overall areas to be assessed: Social skills (communication and interaction), restricted or repetitive patterns of behaviour (lining things up, obsessions, restrictive food choices, sensitivity to sensory information), severity of symptoms, the level of impact of these symptoms on daily functioning, and intellectual functioning that can’t be explained by other causes.
You can read about the criteria here on the Autism Speaks website if you’re interested in more detail.
So how do you know you need an assessment?
Let's look at what might lead to you seek a diagnosis.
-You may notice that something is wrong with your child in one or more of the areas we’ve listed above. You may not know what it is, but your gut instinct says that you need to follow it up.
-Your child’s educator may mention concerns they have noticed in the classroom (usually preschool, kindergarten or school).
-Your child’s allied health professional (such as a speech therapist) may express concerns.
-Your child’s doctor might mention concerns during a scheduled appointment.
Who can provide a diagnosis?
A number of professionals have qualifications or experience to perform an assessment for the purposes of diagnosis, including paediatricians and psychologists. My understanding is that (at least) in Queensland a paediatric diagnosis is necessary when your child needs resources and therapy services through the public education and disability systems. However this may be different in other states, so please check with your doctor or school as to which is sufficient to obtain funding for the ongoing services your child needs.
Regardless of which professional completes the assessment/diagnostic process, it’s important to find someone who knows what they are doing. Try these ideas in no particular order or preference (choose the one/s that work for you):
-Ask your General Practitioner (GP) for a referral to a good Paediatrician or Psychologist who specialises in ASD.
-Ask the Guidance Officer/Counsellor or special needs teacher at your child’s school whether they know of anyone.
-Ask other parents of any children you know who have already been through the process.
-Search the internet (or even Facebook or other social media channels) for online ASD support groups and ask questions of other parents. In my experience, other parents can be an invaluable resource for you on this journey.
-Find a local support group that meets in your area and ask questions.
-In the final choice of professional, trust your gut instincts. Both you and your child need to be able to make a connection with this person. If you (as the person who knows your child best) don’t feel you can connect, it may be worth finding someone different (if that’s possible in your area).
The assessment process
The processes involved in the assessment of ASD will likely include:
-a comprehensive parent interview
-information from your child’s education provider (preschool, school, etc)
-one or more visits to different environments your child spends time in, such as school or home. This is to observe your child’s behaviours and habits in a natural setting, if deemed appropriate by the assessor in order to gather further information.
What you can expect
In general, you can expect to cover details about your child’s development from birth (have they met their age appropriate milestones), their intellectual functioning, their behaviours, habits, how they interact with others (of all ages), academic performance, the way they deal with emotions (or not), their reactions to sensory information (bright lights, loud noises, the feel of clothing, the weight of materials, and so on), the way they play, likes and dislikes, any obsessions they have, their ability to listen to and follow instructions, and anything else that might stand out to you.
Either during or after the process you should receive feedback from the assessor about the progress of the assessment and its outcomes, and be given the opportunity to ask any questions. You should also receive recommendations for services or therapies that may help your child, and a detailed written report on the diagnosis.
As your child’s parent it is your right (and responsibility) to understand this report. It will usually be quite scientific and formal, and is often difficult to understand. I would encourage you to take some time to read and process it, and if you need to, ask plenty of questions about what it actually means.
Take the time to understand the implications that this outcome has for your child and your family and try not to feel intimidated by the professional in front of you. If you feel like you’re being pushed out the door either ask for a further appointment or stand your ground in order to ask your questions.
ASD is often diagnosed in conjunction with other disorders, so be aware that you may get more than one label. Also prepare yourself for something completely out of left field. The most common labels that can come with ASD include (but is not limited to) anxiety, Attention Deficit Hyperactivity Disorder (ADHD), Attention Deficit Disorder (ADD), Oppositional Defiance Disorder (ODD), Epilepsy, Intellectual Disability/Impairment.
You can expect the entire process to take a number of visits over several months. This will depend on the skill/experience of the assessor, the severity of your child’s condition, your child’s readiness to engage with the process and the availability of appointments, amongst other things.
Preparing for the Assessment
Any detailed information will help your assessor make an accurate diagnosis. This includes behaviours, tantrums (and triggers, if known), anxieties, obsessions, learning difficulties, social difficulties and so on. In order to do this, try the following tips:
Keep observation notes/diary on your child’s behaviour. This can be particularly helpful as it will give the assessor a more complete picture of what is going on for your child. It’s important to include as much detail as possible, such as the date, time, the events immediately before the behaviour, the location (e.g., supermarket, outdoor area, at home, friend’s house, school, etc), your child’s behaviours, what happened after, any comments your child made, and even your own reactions (even when you keep it to yourself). At the end of each day (or when you get a few moments to yourself during the day), jot down anything of note about your child’s behaviour. This may include a number of areas, such as:
Ask your child’s educator/s for letters of support, which outline key information about his or her learning. For example, any areas your child excels at, any difficulties, academic performance, behaviours, any daily observations of significance, and so on.
Write down a list of any questions you may have. This ensures that you will remember them, as often they will slip your mind in the rushing of getting your day organised.
Keep a notebook by your bed to jot down anything you think of in the middle of the night. This will mean you don’t have to worry about relying on your memory and you can allow your mind to rest.
Take a trusted friend/family member with you to appointments. They can take notes so you can focus on asking questions and understanding the answers. They can also support you during any difficult conversations, particularly if you feel like your needs are not being met.
Go in prepared. This can be a very daunting and overwhelming process. Arm yourself with quality information from reputable sources (the links at the end of this article can be a good starting point).
Find someone to debrief with. This can help you to process the massive amounts of data this process requires. It’s a stressful, challenging time to undergo and having someone to offload with can literally save your sanity!
Link yourself (and your family) with the Carers Association in your state. Australia has a network of organisations that are specifically set up to support you as a parent of a child with special needs. These organisations can help guide you through the process. They often run support groups, training and information sessions. They have a large network of service providers and can refer you to supports in your area. And they can also provide you with a listening ear when things seem overwhelming. The overarching organisation is Carers Australia and each state then has its own organisation, named appropriately. You can access them through their respective websites, or the nationwide phone number, 1800 242 636 will get you through to the head office of the state you call from.
What to do if you aren’t happy with the assessment or the process
Like any professionals, paediatricians and psychologists have different areas of speciality. There are some great ones, and some not so great ones. It’s important to find one that you and your child can connect well with. Unfortunately, it’s not unheard of to find people who are unhelpful. Some may outright say they don’t believe in diagnosing children (or ASD). Others may say there’s nothing wrong and call you (or imply) a neurotic parent. Still others may draw out the process, procrastinate and avoid finalising anything.
If any of these happen I’d encourage you to trust your instincts. You are your child’s parent. The person who knows him or her best. If every fibre of your being is telling you that something is going on, then stand strong in that position. Discuss your concerns honestly and openly (a strong support person can be very helpful on this one) with the assessor. Ultimately though, if you don’t get satisfaction from one professional, it is absolutely your right to go elsewhere. You don’t need to justify that position to anyone, especially yourself!
It may be helpful to remember that this professional is still a human being, and as such is open to the vulnerabilities of all humans. While he or she may have years of education, training and experience with ASD, every single child on the spectrum is an individual. The spectrum is a long one and not every child will fit the common ASD mould. As the person who spends the most time with your child, YOU are just as much an expert as the professional in front of you. ASD has so many hidden nooks and crannies and your child’s pathway within that arena is completely unique. Your voice is just as valuable as the professional’s. I’d even suggest that it’s more valuable. Don’t be afraid to use it.
I trust that this has been helpful for you. I encourage each of you to discuss this information freely and openly with each other in the comments below, as this kind of dialogue can be helpful. I’ll be back next week to discuss life after the diagnosis – Where to next. In the meantime, if you have any questions I’ll be happy to help where I can.
You may find the following resources helpful in sourcing information and support for your ASD journey:
Research Autism has a lot of information about ASD. Definitions, criteria, diagnoses, treatments, difficulties and challenges, and so on.
Tony Attwood is one of Australia’s leading experts on ASD. He runs a clinic in Brisbane and travels the country presenting training and workshops. He also has a number of books and other resources.
Autism Spectrum Australia provides services and supports to families in NSW and Victoria
Sue Larkey is an educator and has many years experience working with ASD families within the education system. She conducts workshops and has some great resources available
Autism Association of Western Australia
Victoria’s Autism Association
About a Bugg is a blog about one family’s experience with ASD. Engagement and support is encouraged by the mother at the heart of this family.
Helping girls with ASD make friends
Ali Bengough is currently studying her Masters degree in Applied Psychology at the University of Queensland. She has been working as a counsellor for ten years and loves what she does. She is passionate about helping people find their purpose and overcome the barriers that hold them back from living their dreams. She blogs over at The Mindset Effect, where she writes about anything
related to the way we think and feel. This is complimented by a Facebook page and Twitter account. She loves to hear from her readers and welcomes feedback on what they would value reading about. When she graduates, Ali plans to use her blog to launch her business, creating a comprehensive site offering a variety of individual sessions, group workshops, online programs and other resources. She is currently in the process of writing the first of many books.