April abounds with content about Autism Awareness. Sadly, increased acceptance is still lagging. Autism Spectrum Disorder (ASD) diagnoses are now frequently made in childhood, with numbers of diagnoses increasing. A diagnosis during childhood places massive burdens on parents as caregivers. Living abroad can exacerbate the burden further – whether due to not necessarily speaking the local language or struggling to comprehend local attitudes at odds with those elsewhere.
ASD diagnoses: a blessing or a curse?
Diagnoses comes after months of close observations and questionnaires. It might seem like the light at the end of the tunnel, but taking everything on board can be overwhelming. Public health crises, healthcare staffing shortages and limited resources for therapies further increase the burden. And there is a frequent struggle for acceptance of children with ASD.
Diagnoses may provide answers, but also trigger further complications, especially following ASD diagnoses in early childhood. Many questions arise from a lack of acceptance. Formal diagnoses come with practical consequences like having to inform kindergarten/school (particularly if their developmental concerns instigated the diagnosis process) where your child and their siblings might be (relatively) settled. It might also be worth mentioning that some psychologists choose a formulation indicating a “suspicion of ASD” (“Verdachtsfall”) for assessments conducted before the age of four.
It is difficult enough finding a new kindergarten (as this past blog post illustrates) at the best of times, but near impossible with a confirmed ASD diagnosis. This might be the first encounter for parents in terms of a lack of acceptance as prospective institutions choose to see an “autistic child”, rather than a “child who happens to be autistic” without examining the specific case in hand.
Routine, Routine, Routine
Settled routines become an essential part of daily life, so even personnel changes at amenable Kindergartens/schools become a source of parental dread. Changes in familiar faces, whether as teaching staff or therapists, cause considerable disruption. Changing groups within a kindergarten may be slightly more straightforward, but a fresh start elsewhere can be far harder. From school age, while private schools may be more accommodating, they form a massive financial burden for parents, who also have to cover all therapy and assistance costs – and may only receive partial reimbursement at best. In contrast, while the state/public system is free, available support might be very limited.
And in this new maelstrom, everyday life continues relentlessly. Post-diagnosis, there is so much to take on board: logistical upheavals, the impact on daily life, all the way through to explaining the diagnosis to your child, their siblings, and your family and friends (part of parental acceptance of the situation), while trying to remain on an even keel professionally. It is emotionally draining, even more so when well-meaning friends chip in with ‘helpful’ comments verging from “there’s a good school in [district on the other side of town]” after you have explained logistical hurdles, or “[insert celebrity name here] is/was autistic”, to questions like “which one of you did they get it from?” or even “you wouldn’t know it when you look at him/her/them!” From personal experience the most welcome and accepting response was “What activities can we do together that the children would enjoy?”
Parental resilience and acceptance
As parents you have a constant battle and strain of sifting through conflicting advice, accessing information in your own language, and figuring out how to obtain access to professional advice in Vienna. Specialist parental counselling is in desperately short supply with lengthy waiting lists. For parental counselling and therapy spots, both Autistenhilfe and VKKJ have lengthy waiting lists often restricted to certain catchment areas. It is least available when parents need it most – directly following diagnosis.
It can place pressure on your relationship with your partner/spouse – “you time” (both singular/plural!) becomes a premium commodity. Parental resilience is not to be under-estimated. The workload cannot fall exclusively on one parent – a united team is essential. We coordinate professional and recreational commitments together, also to ensure that we both get time to unwind, including trips abroad to friends/family, while also actively taking a hands-on role in parenting (from school runs, medical appointments, paperwork, presence at kindergarten/school events, ensuring parental cover is on hand, or leaving the office to share childcare).
Parental acceptance also relies on learning to stop drawing comparisons against own lived (neurotypical or neurodivergent) experiences or those of siblings, and in accepting the situation as it presents itself. It involves learning patience and empathy when simple routines that you take for granted are a struggle, as well as working together with them to broaden their horizons, improve motor skills, concentration, or attention span. You learn to accommodate your child’s interests and strengths (while also trying to extend boundaries and taking them out of their comfort zone), supporting them in their learning, and diversifying their interests (e.g. learning to swim can be a massive benefit for them) and tastes gradually by actively involving them, as well as celebrating their personal achievements. For this reason, once pandemic restrictions were lifted, I took my son to the office with me during his school holidays so he could also experience my world –colleagues were very supportive of this initiative, which was important in terms of parental acceptance.
That was the first part of the blog post. The continuation is coming out next Tuesday…
Have you recently received an ASD/ADHD/ADD diagnosis for your child, or has it been suggested that you should have developmental issues checked out by a psychologist to clarify a suspicion of such a disorder? Our WhatsApp group is here to help parents. Further information can be found on the VFN website.
BIO
Mike Bailey has lived in Vienna since 2000, and is an in-house translator specialising in financial markets supervision, and married father of three children (Alex and twins George and Charlotte). He is actively involved with British in Austria, although he is now a proud Austrian citizen.