In the second of a two part series, guest author Kristen Callow provides a list of resources and advice for every potential SNAFU that may arise for parents with concerns about their child’s developmental differences.
As the mum of a child with multiple special needs, I am passionate about promoting acceptance and about encouraging parents to seek professional guidance if they have concerns about their child’s development.
It’s not always easy getting answers. A parent might take those first hesitant steps toward assessment, only to be met with a number of “SNAFUS” (obstacles). Recently, I polled a large group of parents from my ASD, ADHD, and twice exceptional networks to see if we could pool our individual experiences into collective advice. This isn’t professional counsel; rather, it represents practical advice from parents who have “been there” and want to help others avoid some of the same frustrating obstacles to getting answers.
Above all else, I hope you will remember the mantra “If in doubt, check it out” if you have any concerns about your child’s development. Parent-to-parent insights can be great, but it’s essential to get the input of a qualified professional(s) with relevant expertise.
POTENTIAL SNAFU #1: Your friends and family think you are being overly dramatic or worrying unnecessarily about your child.
ADVICE: See mantra above. “If in doubt, check it out.” If you need extra encouragement, please see this spot-on advice from the experts at First Signs.
POTENTIAL SNAFU #2: You share your concerns with your GP, but he/she is dismissive.
ADVICE: A very recent national survey of autism parents/carers conducted by Autism Awareness Australia revealed that “GP reluctance to refer on” is one of the most common reasons that autism diagnoses are delayed. At the same time, there are many fabulous GPs out there who will take parental concerns seriously and will refer parents to appropriate professionals for further consideration.
A few things that can be very helpful in “making your case” (these things will also be valuable when you meet with a specialist):
- Write down all of the behaviours, quirks and challenges that concern you or strike you as unusual. Note the frequency and intensity of these as well. For instance, “Oliver flicks his fingers in front of his eyes – multiple times per hour and focuses on nothing else when doing so. He has been doing this since he was 12 months old.”
- Video tape behaviour that might seem unusual (as long as you aren’t putting the child at risk or shaming him/her in the process, e.g. by sharing publicly)
Above all else, remember that you and your child deserve to be seen by someone who will respect to your concerns. If you feel that you are being “fobbed off,” you should feel empowered to see another practitioner.
Fellow parents — especially those who have kids with developmental differences — can be a great source of recommendations, as are other health care professionals with whom you have a trust-based relationship.
POTENTIAL SNAFU #3: You are worried about talking to the GP in front of your child.
ADVICE: If possible, book a double session and bring another adult along. You can use the first part of that appointment to share your concerns, and then the GP can meet with your child. Alternatively, write up and print off your list of concerns, and present them to the GP. Indicate that you would like to be referred on to a good developmental (specialist) paediatrician, or other relevant specialist.
POTENTIAL SNAFU #4: You get sent to a paediatrician, and he/she rules out certain developmental conditions without providing a clear basis.
(The infamous: “Oh, he can’t be autistic…he makes eye contact.” “She can’t have ADHD…she earns good grades at school.”)
ADVICE: Conditions like ASD and ADHD cannot be ruled in or ruled out with a cursory examination. Moreover, every paediatrician will have their own areas of expertise and experience. Some are brilliant at assessing potential developmental conditions; others are not.
- One powerful way you can help safeguard against a misdiagnosis, or more significantly, a missed diagnosis is going to a good developmental (specialist) paediatrician, psychologist, or multi-disciplinary team who have deep expertise in developmental conditions and who are thorough in their assessments. Again, other parents of kids with special needs are often great sources of recommendations.
- Parents should feel empowered to ask their paediatricians (or any professional) what formal tools will be used in making an assessment and how they will reach their conclusion.
- Be familiar with the most commonly used tools for conducting robust developmental assessments (see below). If parents ever feel that the assessment process has been compromised in any way, they should feel empowered to seek another opinion.
- This link from the “Raising Children Network” does a nice job of summarizing some of the common tools used in conducting a robust assessment for ASD.
- This article from ADDitude magazine does a nice job of covering the major components of a thorough ADHD assessment, complemented by a brief but good overview from the Raising Children Network.
POTENTIAL SNAFU #5: You want to investigate concerns — your parental instincts are telling you something — but your partner is reluctant
(e.g. doesn’t want to contemplate the possibilities, doesn’t want to “label” the child, etc.)
ADVICE: It’s not uncommon for one parent to struggle more than the other when considering potential developmental needs or coming to terms with a diagnosis.
What has worked for many of us in those instances is this: Instead of going to a partner and saying, “I think Oliver is autistic” or “I think Sophie has ADHD,” try packaging it as: “We have a great kid. He/she is struggling right now, and I think we need some answers so that we can support him/her more effectively.”
Some parents initially shut down when mention is made of specific conditions, but they might be more receptive to a “fact-finding mission” to better understand their child. Which is precisely what a developmental assessment is!
This is also where the value of a top-notch specialist can come in. For instance, my husband was reluctant to have our daughter assessed for ADHD (“She already has a diagnosis of ASD. Do we really need another assessment?!“), but he is also someone who respects facts, evidence-based approaches, and expertise.
When our stellar developmental paediatrician methodically explained the outcome of the assessment, walked him through the diagnostic standards and how that diagnosis was reached, and respectfully and fully addressed every question, my husband couldn’t help but feel like the diagnosis was accurate, and he has embraced it.
POTENTIAL SNAFU #6: You want to investigate concerns, but you are really concerned about the costs of an assessment.
ADVICE: Talk to your GP about accessing public assessment services. The wait is typically longer than for private services (though not always), which is all the more reason to get the ball rolling sooner rather than later.
If you are going private, you can often access various Medicare rebates with a GP or paediatrician referral. As assessment will still cost money, to be sure, but you won’t be out of pocket for the full cost.
Here is a link to some of the government-funded assessment centres in Australia, including several in the Sydney metro area:
POTENTIAL SNAFU #7: You are worried about labelling your child.
ADVICE: A thorough assessment, regardless of outcome, gives you information that will help you understand your child better. Moreover, a diagnosis, if warranted, allows your child to access certain key supports, including accommodations at school, special provisions for tests and assessments, various Medicare rebates, and depending on the condition, funding. But perhaps the biggest “plus” for getting those answers is allowing your child to understand more about him/herself.
These two pieces address the value of having the “right label” — one takes a gentle approach, the other a more “in-your-face” approach, but their messaging is similar:
POTENTIAL SNAFU #8: The concerns about your child have come not primarily from you but from day care providers and/or teachers.
ADVICE: While it is not appropriate for day care professionals or teachers to be making diagnoses, it’s important to recognize that many of them have the advantage of working with large numbers of children — day after day — and in seeing our children in an environment different than the home environment.
If a day care professional or teacher approaches you with concerns, please try not to take their input as a criticism. Set up some time to speak and ask them to provide you with some very concrete examples of things they’ve observed that are concerning to them. That way, you will have information to share if/when you move forward with getting some external specialist advice.
If you believe it truly *is* a case of a particular carer or teacher jumping the gun, consider listening to their concerns with an open mind. It could well be that some of those same concerns will be voiced by another teacher in the future.
POTENTIAL SNAFU #9 (the contrasting point to the previous one): You have concerns about your child, but his/her teacher does not share them.
ADVICE: Teachers can be amazing sources of information, insights, and support, but they are not able to definitively rule in or rule out developmental issues. To be fair, many children present one way at school and a totally different way at home. Also, some children have profiles (e.g. gifted with ADHD, the “quiet Aspie” girl) that make it easier for their needs to go undetected. Once again, this illustrates the importance of getting expert counsel from a specialist who has that deep expertise in child development and behaviour and who can look broadly across the child’s entire profile (not just their persona at school or at home).
POTENTIAL SNAFU #10: You are scared. You know you should take some action, but you feel overwhelmed and scared.
ADVICE: This is coming straight from my heart because eight years ago, I was that scared mother. You are not alone. You might feel like you are alone, and you might feel totally overwhelmed, but you are not alone, and there is help out there.
For anyone grappling with a new or potential autism or ADHD diagnosis, there are some wonderful parent support networks out there, both in person and on line. There are also a lot of autistic teens/adults, teens/adults with ADHD, and people with other conditions actively blogging and sharing their stories. They are often very well positioned to enlighten and demystify things that might seem totally daunting to us parents. Learn from them.
Please, please, please remember this: Your child is amazing, unique, and lovable no matter what result an assessment brings. Be sure to surround yourself with people who feel the same way!
SOME ADDITIONAL LINKS THAT MIGHT BE OF INTEREST
- ASD Overview – Raising Children’s Network
- ADHD Overview – Raising Children’s Network
- SPELD NSW: Supporting specific learning differences
Research continues to show that girls on the autism spectrum are at much higher risk for delayed diagnosis or not being diagnosed at all. Thankfully, there is growing awareness of this issue. Two good overviews can be found here:
- Early Signs & Social Profiles of Girls with Asperger’s Syndrome (now officially just called ASD)
- “Twice Exceptional: Smart Kids With Learning Differences”
About me (Kristen): I am an American mom in Sydney, raising two Aussie-American children. Thanks to my daughter, who was formally diagnosed with autism at age 3 (and later diagnosed with ADHD, along with being gifted), I am passionate about promoting the importance of early detection and early intervention. I am equally zealous about acceptance of neurodiversity. I get a lot of fulfilment from helping other parents who are grappling with a new or suspected diagnosis for their child.