Jenny sat facing the ocean and, as the waves rolled in and out, so did her anxiety. That morning, at her daughter’s Well-Child Visit, she’d heard the pediatrician’s recommendation for a formal evaluation for autism spectrum disorder (ASD), but she couldn’t quite process it yet.
“I don’t even know how to get my child tested for autism. Can you help me?” She had asked the question, but the answer overwhelmed her, along with everything else going on.
She wasn’t sure she wanted a formal diagnosis of autism. What was the point? Didn’t her daughter have enough challenges to face without adding a label to the list? One thing she knew, though, she loved her daughter, and she would do whatever she could to make her life as beautiful as she was.
Jenny decided to ground herself with an exercise her therapist had taught her. She closed her eyes, listened to the sound of the ocean, felt the warm sand like a comforting weighted blanket on her feet, tasted the salt on her lips, and relaxed into the moment. Suddenly her decision was clear, she would do what she needed to do, one step at a time.
In this article I will be discussing the autism testing process, how to get your child tested, why an official diagnosis is important, and who can diagnose autism in four different countries.
Why get an official diagnosis for autism?
The importance of an official autism diagnosis is really based on the fact that, especially for children, the ASD diagnosis is the “golden ticket” to be considered for services. It tells the necessary people that someone is entitled to accommodations and services they may need, and resources that can help them throughout their life.
Early diagnosis of autism spectrum disorder means early intervention. The sooner your child has a diagnosis, the sooner they can get the support and services they need.
People with autism may need services throughout their life. Starting with early intervention, as a young child’s development progresses the services they require change with them. Here are some services that could benefit your child when they are young, and into adulthood.
Accommodations in school settings
In school settings, the provisions for accommodations are listed in an individual education plan (IEP) or a 504 plan. This is the legal document that tells the administration, teachers, and other staff the needs of your child while they are in school. An IEP and 504 will go with your child through college graduation.
Some services in school can include:
- Therapists, such as an occupational therapist (OT) visiting school to work with your child
- Technological aids, such as an iPad for communication
- Having a behavioral aid to accompany them to classes, around campus, and during transportation to and from school
- alternative learning options
Some of the accommodations in school will be for comorbid conditions as well. One example of this would be being allowed to wear noise canceling headphones in class for sensory processing disorder or misophonia.
Accommodations at home
Many of the challenges children with autism spectrum disorder face, they tackle at home. Social interaction skills start at home, as do self help skills.
As a child grows, the accommodations provided at home build a foundation for the skills they build and use in the outside world. Therapies can take place in home, though some require in-office appointments:
- occupational therapy
- applied behavior analysis therapy
- physical therapy
- behavioral therapy
- speech therapy with a speech language pathologist
Environmental accommodations can also be made in the home. Providing spaces for our children that help them meet their challenges, while fostering independence, peace, and happiness is what makes a house a home.
Acquiring the necessary materials needed to make your child’s home life easier as they meet their challenges, begins with a diagnosis. Referrals for therapy, medical or technological devices needed, and access to financial aid all happen first at home, as parents reach out for what they need. The official diagnosis is the key that opens the door.
Accommodations in the workplace
Children with ASD grow up to be adults with ASD. Their diagnosis entitles them to workplace accommodations to help them complete their tasks safely and efficiently. These can include but are not limited to:
- Alternative forms of communication: email, video chat, or text messages
- Flexible schedules
- Job tailored to strengths within a position
- Parking accommodation
For those who need it, most do even with high functioning autism (asperger syndrome), financial aid is available. This might include:
- Grants (i.e. housing grants, educational scholarships)
- Supplemental security income: SSI benefits
These resources and much more are available if you have a formal diagnosis. No one likes to feel as if their child is labeled. If we think less in terms of labeling and more in terms of having access to benefits, it can help us paint a more accurate picture of diagnosis.
How to get a formal evaluation, testing, and diagnosis
The first step to testing and diagnosis is to speak with your child’s healthcare provider about any symptoms you may have noticed or concerns you may have about your child’s development. Diagnosing children as young as 18 months is possible.
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In the USA, Well-Child Visits help doctors see how your child is doing, and how their developmental screenings compare to other children their age. Regular Well-Child Visits really help with early childhood diagnosis for two reasons.
- Your child’s pediatrician or general practitioner (GP) seeing them regularly increases the chances that any developmental delays or symptoms new or ongoing are caught more quickly
- Each stage of your child’s developmental history is captured and recorded at each visit, any concerns raised by you or the healthcare provider can be dealt with, and the proof of symptoms can be passed on to the next professional who needs them
Once you have talked with your child’s pediatrician or GP, you can move into the next phase of the process. There are differences in these processes depending on where you live. Below I will give a brief description of what the process looks like in the United States, the UK, Canada, and Australia.
One common denominator is that an autism assessment will include discovering if your child’s symptoms meet the diagnostic criteria for autism. Evaluation and testing may include:
- developmental and behavioral screening through a formal developmental evaluation
- childhood autism rating scale
- autism diagnostic observation schedule
- social communication questionnaire
Sometimes the screening process identifies other medical conditions that need to be evaluated first to either rule out autism spectrum disorder, or confirm it, and the presence of a comorbid condition.
These could result in a doctor ordering another medical test such as
- blood test
- genetic testing
- hearing test
- fragile x testing
- ADHD testing
- intellectual disability testing
In the US
In the US, if your child is suspected of having ASD, you will need to see either a child psychologist, a developmental pediatrician, pediatric neurologist, or a qualified child psychologist. Whichever one of these you choose will begin the formal evaluation. Depending on the results, your child may be diagnosed immediately, or referred to other specialists for further evaluation.
In the UK
In the United Kingdom, autism specialists are the ones who can diagnose autism. For a child under five, you can start by speaking with a health visitor to be referred for testing. For other children, a GP, a special education needs coordinator (SENCO), or other doctor or therapist can all help you with getting an assessment from autism specialists.
According to the Government of Ontario’s website, you can get an autism diagnosis for your child or youth from qualified professionals who have undergone specific training. These include, but are not limited to:
- doctors, such as family physicians, pediatricians, developmental pediatricians, and psychiatrists
- psychologists and psychological associates
- nurse practitioners
You can also receive a diagnosis of autism from one of the five diagnostic hubs funded by the ministry. The process might differ for other provinces.
In Australia, single clinicians who have experience and training in autism can diagnose autism, as well as teams made up of doctors who combine their expertise to help assess and diagnose children with autism spectrum disorder. There are several programs and avenues available based on your location and availability throughout the country.
Once your child has an autism diagnosis, the next steps are to reach out to the recommended professionals and service providers to begin the process of helping your child with their specific needs and challenges. Each country, and in some instances each territory or state, may have different options and procedures to follow. I have included some links below with information to help, but your child’s doctor will also be able to guide you.
If you are worried about whether having a diagnosis of ASD is right for your child, talk to your child’s pediatrician or other healthcare provider. They can direct you to the help you need. Depending upon where you live, the providers who can assess and diagnose your child may have limited availability and there could be a waiting list.
However, many of the symptoms children with autism can struggle with can be helped while you are waiting. Parents know their children best.
Reaching for help is the first, and often the most significant step. It’s going to be ok, breathe, you’ve got this!
Elder, J. H., Kreider, C. M., Brasher, S. N., & Ansell, M. (2017). Clinical impact of early diagnosis of autism on the prognosis and parent-child relationships. Psychology research and behavior management, 10, 283–292. https://doi.org/10.2147/PRBM.S117499