How to start the autism diagnosis process
It may have taken a lot of time and energy already to realise and accept that there may be something amiss with your child’s behaviour. It’s never easy dealing with that unsettling feeling that things are not as they should be.
So it can be tough to then steel yourself to gain a formal diagnosis for your child. Particularly if you have no idea how to go about it and if you are still coming to terms with the very need for it yourself.
I’ve had a few inquiries recently about how to start the autism diagnosis process so I thought sharing a rough guide on how to seek a diagnosis would be beneficial.
You see, the process itself changed for me between the diagnoses of my two kids (back in 2008 and 2012) and it has changed again. The introduction of the NDIS has altered the provider landscape in the trial sites, including here in Newcastle, and has added another layer of complexity for families.
It’s important to note that there are exceptions to this pathway. For instance you may receive a diagnosis through a dedicated service provider such as ASPECT, rather than through a peadiatrician. But most people I have encountered have received a diagnosis by following the pathway below.
Important – please don’t give up before you start
It can be daunting to know even where to start when looking at the autism diagnosis process. There are so many specialists and programs and criteria and funding options that it can seem totally overwhelming. Believe me, I know from experience that it can seem much easier to bury your head in the sand than begin a possibly long, painful, expensive and gruelling road to diagnosis.
But it’s important to start – you can’t give up or give in. You owe it to your child to rule in or rule out serious diagnoses, as early as possible, so you can get them the help and assistance they need to thrive.
Remember, early intervention is key to helping kids maximise their potential and get them ready for school – it’s SO important to give them every chance to succeed in their own individual way.
The pathway to an autism diagnosis
The autism diagnosis process could be different, depending on your child and who you seek help from, but here are the traditional steps involved in gaining a diagnosis for your child.
Visit your GP
This is always the first step as your GP is your way into the system. GPs can provide the following services:
- physical exam to verify your concerns
- conduct mental health care checks and prepare plans to access subsidised psychology services
- referrals to specialists such as paediatricians, psychologists, speech pathologists & occupational therapists
- ongoing care for your needs as a carer
- information on medications, local health care programs and support organisations
You need to see your GP first in order to gain a referral to a paediatrician who will traditionally be your next port of call. Finding a good GP is vital in both the initial diagnosis process but also for ongoing care for your child and for the rest of your family (especially YOU!)
See a paediatrician
A paediatrician is a specialist in child health and can be a lifesaver if you have a child with multiple conditions. Paediatricians can provide the following services:
- holistic care for your child – they can coordinate all other specialists and provide a big picture view of your child’s needs
- a provisional diagnosis based on all available and relevant evidence
- referrals to specialists to seek assessments or to confirm a provisional diagnosis
- organise physical tests and assessments as required (such as MRIs, X-rays, blood tests, allergy tests, etc.)
If you haven’t already organised specific autism assessment testing with allied health professionals, such as occupational therapists or speech pathologists, the paediatrician will refer you to suitable therapists so these tests can be undertaken. You may then be referred to a psychologist to confirm a provisional diagnosis of autism.
Complete checklists, surveys and assessments
Whether you see an OT, a speechie or a psychologist (or most probably all three) there will be multiple assessments, surveys and checklists to complete so they can get a measure of your child’s difficulties. These will be a mixture of appointment based activities where they will watch your child undertake certain tasks, interview questions for both you and your child to answer and take home surveys for you to complete.
If your child is in school or in daycare there may also be questions and information that will need to be sought from their teacher or carer(s). Gaining information from home and from school/daycare helps build a picture of your child and their needs and is vital for the provision of an accurate diagnosis.
To be given an autism diagnosis your child needs to meet certain diagnostic criteria and there needs to be evidence that they do meet these requirements. The following checklists could be used by specialists and allied health professionals to assess whether your child does exhibit behaviours consistent with an autism diagnosis and supply the evidence to support their conclusion:
- Child Autism Rating Scale (CARS)
- Autism Detection in Early Childhood (ADEC)
- Social Communication Questionnaire (SCQ)
- Autism Diagnostic Observation Schedule (ADOS)
- Autism Diagnostic Interview — Revised (ADI-R)
- Psychoeducational Profile (PEP)
- Mullen Scales of Early Learning
- Weschler Pre-school and Primary Scale of Intelligence (WPPSI)
- Wechsler Intelligence Scale for Children (WISC)
- Universal Nonverbal Intelligence Test
- Stanford-Binet Intelligence Test
- Modified Checklist for Autism in Toddlers (M-CHAT)
- Developmental Behaviour Checklist (DBC)
- Psycho Educational Profile – Revised (PEP-R)
- Autism Behaviour Checklist (ABC)
Speech Pathology Assessments
- The Clinical Evaluation of Language Fundamentals – 4 (CELF – 4)
- The Preschool CELF – P2
- Rosetti Infant-Toddler Language Scale
- Preschool Language Scales – 4 (PLS – 4)
- Children’s Communication Checklist -2 (CCC – 2)
- Test of Problem Solving – 3 (TOPS-3)
- Test of Pragmatic Language – 2 (TOPL – 2)
Occupational Therapy Assessments
- developmental assessments such as the Bayley Scales, the Batelle Developmental Inventory, the Carolina Curriculum, and the Hawaii Early Learning Profile (HELP)
- motor assessments such as the Peabody Developmental Motor Scales
- sensory measures such as the Sensory Profile
- measures for evaluating performance of everyday activities, such as the Canadian Occupational Performance Measure.
Don’t stress at the length of this list. You and your child will not be made to undertake each and every one of these (I’ve been through the process twice and haven’t come close to doing most of these!)
However this list may give you an idea of the many different ways autism assessment can be undertaken. Which obviously contributes to that feeling of overwhelm as you carefully consider the way forward for you and for your child.
After all the assessments have been undertaken, you will eventually receive a formal diagnosis OR autism will be ruled out as a diagnosis for your child. You will receive reports from each specialist and you will need to keep these in order to access support, funding and other means of assistance.
The diagnosis is normally confirmed by the paediatrician and they will be able to refer you to relevant state based agencies for ongoing support. Your referrals to each specialist for the purposes of the autism assessment should also allow you to go back to these specialists for ongoing therapy, although new referrals are needed each year.
Depending on where you live, the next steps could be as follows:
If you live in a NDIS trial area (like me) you will be encouraged to apply for support for your child through the NDIA. If deemed eligible, a plan for support will be drafted (with your input) and funding will be provided based on need and on the goals and objectives set out in the plan. You can find out more about my thoughts on the NDIS here.
If you are not currently in a NDIS trial area, the Helping Children with Autism package is available to help in the first years following a diagnosis (provided the diagnosis is received prior to your child’s 6th birthday). It can also help you through the autism diagnosis process by providing medicare subsidies to reduce some of the costs of seeking a formal diagnosis. Your GP and/or paediatrician will be able to provide more information about this.
You may also be able to apply for a Carer Payment through the Department of Human Services which can also help with the extra costs associated with caring for a child on the autism spectrum. Depending on your income and the needs of your child, there may also be other payments and allowances available to you as well.
The following state autism organisations also have great resources and provide a range of supports to newly diagnosed children and their families:
ASPECT – NSW
AMAZE – Victoria
I recommend that you make contact with your state organisation and find out how they may be able to help you.
And I also recommend these posts too, as they go into more detail about the resources available to newly diagnosed children and their families:
I’ll share my own diagnosis story in a further post but I hope this can go some way to helping at least one person navigate the autism diagnosis process.