The moment comes when I need to speak about one of the most important aspects of life with autism and autistic individuals – the various kinds of support and assistance they and their families receive (here in Germany). I’ll emphasise straight away that in our family, all dealings with institutions were taken on and handled from the very beginning by Lea’s mother, while I, in most cases, played the role of a “supporting companion.” Even in the years when the little one lived with me, her mother continued to take care of all communication and organisation related to the various social services. Without her persistence, competence, and dedication, this child would never have reached the level of development she’s at today. My deepest respect!

To speak of the shock, the pain, the utter confusion and despair that come with the initial realisation that you’re the parent of a child with a lifelong disability is no small thing; I believe thousands of others in similar situations might find hope, reassurance, and strength in descriptions of their own life paths. But even more important is describing the ways in which those parents managed to find a path through the labyrinth of despair and unbearable burdens that such a life entails. And in this regard, of course, above all else stands the assistance of various organisations and institutions that every modern and well-structured society ought long since to have established in our, ahem, so-called progressive era. But let’s not waste any more time on introductions.

The main work of diagnosing, monitoring, and potentially treating various forms of childhood disabilities here in Germany is carried out by the so-called Social Paediatric Centres (SPZ). These are a special form of care for children and young people with disabilities, not simply part of the medical system. They were first established in 1968, and later – in 1989 and 2003 – went through two legislative updates that further defined and developed their remit. To open such a centre requires special authorisation, issued by a committee composed of members from the healthcare insurance system and the so-called Kassenärztliche Vereinigungen – that is, the professional associations of all German doctors that regulate relationships between them and various insurance providers.

SPZs are specialised, interdisciplinary institutions. They employ not only doctors but also various other specialists – speech therapists, psychotherapists, social workers, and others. The centres are designed to offer broad and multifaceted support to children and their families.

In the years when Lea was born, the term “autism” still hadn’t gained the level of recognition and familiarity it has today. So, for many years, we lived with a variety of diagnoses grouped under the umbrella term “developmental delay.” Before we arrived at the final diagnosis of “early childhood autism” – which in our case more or less marked the end of the endless and sometimes extremely difficult series of examinations and tests – five or six years had passed. Only then did we begin to focus our efforts on various types of physical therapy, without which the development of a child like this would be delayed even further and could have very serious consequences. But everything in its own time…

Identifying the cause of one or another form of developmental delay in children is, without question, an extremely complex and delicate task. In the early years of Lea’s life, we underwent dozens of tests – sonography, multiple blood samples, electroencephalography, CT scans, and many others I can no longer recall. Given how nearly impossible it is to get a child like this to remain calm in the presence of all those buzzing, blinking, clattering, poking machines, some of these procedures turned into major trials for the whole family. For example, in order to perform a successful CT scan, it’s crucial that the patient – who lies inside this giant tube – keeps their head completely still for the duration of the scan. With Lea, that was absolutely impossible, even though I lay there with her the entire time trying to keep her head steady. The child could not be calmed by any means, and the only solution turned out to be performing the procedure under full anaesthesia (which, of course, came with new fears about what such a radical intervention might do to her already fragile and unstable physical condition). In the end, she spent two days in a standard hospital setting with her mother in order to complete the procedure. None of us has ever forgotten that.

Our child may well be a textbook case of the complete inexplicability of autism’s origin, since Lea has never shown even the slightest trace of physical anomalies, injuries, or any other symptoms of illness. She is physically healthy in every respect and always has been (she has never taken any kind of medication on a regular basis; in general, medications are unfamiliar visitors in our home). And yet, from the very earliest age, she displayed clearly pronounced apathy and a general delay in all motor and mental functions (her head would flop loosely backwards; she never crawled as a baby and never exhibited the normal signs of childhood development, such as curiosity or attempts to explore the world around her). All these are symptoms that must be addressed through a systematic effort from the earliest possible age, because otherwise a kind of “vicious cycle” develops, dragging the child into a downward spiral: for normal cognitive, emotional, and other functions of the human brain, psyche, and body to form, constant, healthy movement and interaction with the environment are essential; but in order for that movement and interaction to occur, those same functions must already be somewhat present – and so, unless every possible measure is taken to provide extraordinary support, encouragement, and guidance in bodily and mental activities that any other child would undertake naturally, the autistic child becomes increasingly lethargic and lapses into deeper passivity. Eye–limb coordination is inadequate, and there is a general inability to orient or navigate in almost any environment (the child prefers to sit or lie listlessly and do nothing). Against this, of course, there are many specialised forms of occupational and physical therapy – but they must begin as early as possible; otherwise, things deteriorate quickly and frighteningly.

And so, from a very early age, Lea began a continuous sequence of occupational and physical therapies. This remains true even today, well into her adulthood, because the general tendency toward reduced physical activity is a constant risk for autistic individuals. On the other hand, a structured, regulated daily routine filled with predictable, expected, and ultimately enjoyable activities is of vital importance in the life of every autistic person. Overall, we are very pleased with what Lea has achieved – at the moment, for example, she is one of the most active and enthusiastic members of the Travellers’ Club in the group home where she now lives. She loves hiking, taking long walks, and is incredibly resilient, as I sometimes realise with joyful astonishment when, after several hours of walking through the forest, she is still pushing ahead while I begin, little by little, to run out of steam.

But let’s return to the story. The results of the therapies were significant and important. It is astonishing how many actions that we hardly notice in the developmental phases of neurotypical children require specialised intervention, careful guidance, and endless repetition before they are learned and internalised as routine mechanics by a neurodivergent child. It took years before Lea learned to climb – and especially to descend – stairs. Climbing onto any kind of raised surface filled her with deep uncertainty and fear; learning to jump down to the floor from a standard children’s chair or a therapy platform took one or more years of fortnightly sessions. I can’t recall – and probably couldn’t list – all the “elementary” movements and skills that this child had to learn slowly and painfully, through immense patience and effort on the part of highly qualified specialists. Human consciousness, as I came to understand through all these trials, is like a pyramid that grows from the bottom up, with its foundation made of movements and functions we usually don’t even notice (like the basic action of rolling from back to stomach), but whose mastery and automation are crucial for the development of all higher levels. In neurotypical children, all of this happens naturally. In neurodivergent children, depending on the severity of their condition, it takes an enormous amount of time and effort, usually introduced, trained, and reinforced from the outside, since the child lacks the motivation – and often the neurological preconditions – to perform them independently. And I’ll stress it again: all of this needs to begin as early as possible!

Needless to say, all these costly therapies and medical services are fully covered by the welfare state here. In Lea’s case, it was especially important that after her second or third year – when it became clear she was unable to control her bodily functions – the social services also took over the costs of buying and delivering her nappies, which grew progressively larger and more expensive with time. I have no idea what the total sum amounted to over the next fifteen years, but I wouldn’t be surprised if it would have been enough to buy a luxury car.

Of course, building motor and elementary cognitive functions is only the beginning of the long process of “becoming human.” Far more difficult, slow, exhausting, and at times despair-inducing is the development of the remaining functions and abilities that make us different from all other beings on this planet – the social ones.

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Social functions, naturally, begin to form at a somewhat later stage in childhood, which also brings about a significant shift – the care of your child (if they don’t have physical disabilities or illnesses, as in Lea’s case) passes from the SPZ centres mentioned earlier to the Youth Welfare Office (Jugendamt). From that point on, it coordinates, manages, and oversees the entire distribution of resources and assistance involved in raising such a person. Our own experience was excellent – the German social system lived up fully to our expectations.

Youth services in Germany provide and distribute two main types of support for young people with special needs:

1.   Integration support (Eingliederungshilfen) – covering everything required to ensure the smoothest possible inclusion and integration of the person with disabilities into the normal channels and networks of social life.

2.   Disability support (Behinderungshilfen) – including more specific services such as providing qualified companions who take charge of the child several times a week in order to relieve the burden on parents.

Of course, the most urgent form of assistance is financial, and here too the arrangements are reliable and well regulated. Every family with a disabled child receives, in addition to standard child benefits, a special allowance known simply as Behindertengeld (“disability allowance”). Unlike child benefits, these payments are not age-restricted and – at least in our case – are provided for life.

So what exactly were the dozens of forms of assistance we received over the years – and continue to receive?

First: Kindergarten. The institutional format through which this kind of support is organised is called the inclusive kindergarten – that is, a facility that receives additional state funding in order to provide this service. Any kindergarten in Germany can apply for this status. In our case, the kindergarten that both our children attended applied specifically because of Lea – and as a result, she was assigned her own dedicated caregiver (albeit part-time) who worked exclusively with her for all four or five years. Given that Lea did not interact with any other children and required constant supervision (though there was never any aggression from other children – not in kindergarten), this was absolutely essential. As was the constant changing of her nappies, of course.

Second: Specialised assistants (Einzelfallhelfer). For years they took care of Lea twice a week, usually in the afternoon but not only then. They would pick her up from school and return her in the evening after engaging her in various activities – usually recreational – which they themselves organised. For us, this was simply indispensable.

Third: Summer camps. Lea adored – and still adores – these trips, because the locations are typically peaceful rural areas with well-developed tourist infrastructure, meaning she has everything she needs: tranquillity, nature, and structured, pre-organised activities in which she happily takes part. (It may sound strange for someone with autism, but she loves dance parties and goes wild with delight until she drops whenever she gets the chance.)

The kindergarten years passed quickly and, in some ways, almost effortlessly. As I’ve already described, Lea was slowly and gradually acquiring the basic competencies needed to function in the human world – starting with the physical and moving on to the higher, social ones. Naturally, all within the limits of what was possible. Little by little, we ourselves began to emerge from the depths of our initial depression and despair. Life went on.

Then came the time for school. Special schools in Germany are differentiated according to the type of disability – children with strictly physical impairments require a very different kind of support and education from those with intellectual difficulties. By enormous good fortune, one of the most renowned schools for children with cognitive developmental challenges in Berlin was located just around the corner from our home. It was named after its founder, the German educator and early advocate for special education, Helene Heussler.

But here we come to a subject that continues to provoke widespread debate, both academic and non-academic, and no small amount of tension: how exactly should children with intellectual disabilities – and especially those with autism – be educated? What form of schooling best suits them, and what should we actually be teaching them to prepare them for life?