Children with autism are left by a broken system to suffer and deterioriate

It is a depressingly familiar story. My friends noticed that their two-year-old son was not learning to speak or meeting developmental goals in the same way as their older children. Their GP referred them first to audiology services, which helped a little but clarified that the underlying problem was not his hearing.

The parents made a request for a referral to the HSE Early Intervention Team for children with complex developmental needs in November 2020 and for an HSE assessment of needs in January 2021. A pre-assessment to establish if their son was in need of a full assessment was eventually undertaken by Enable Ireland. It found that their son was on the autistic spectrum, non-verbal, and in need of prompt intervention involving a full suite of services.

Nothing happened. The parents were forced to seek a private multidisciplinary assessment that confirmed the diagnosis of autism.

In late June 2021, the HSE accepted the diagnosis and acknowledged the need for speech and language therapy, occupational therapy and psychological help. Nonetheless, their first meeting to put in place an individual family service plan was scheduled for March 2022, and “no referrals have been made to any public bodies at this time”. Subsequently, it was delayed until November 2022. A formal complaint made no difference.

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Having identified difficulties when he was two, their child will be almost five by the time of the first official meeting the HSE. Early intervention is meant to be for 0-6 years. This kind of delay is inexcusable.

In the absence of State support, the parents resorted to the internet and advocacy groups. It was only through channels such as these that they discovered the domiciliary care allowance for children with severe disabilities and the right to a medical card.

His parents can afford a certain amount of speech therapy, but even privately, it is hard to source. As for occupational therapy and psychological help, where do they even start?

Coincidentally, around the same time, other friends who have an older son with autism and an intellectual disability (ID) were discovering the large gaps in provision for people with autism suffering from mental ill-health.

Scandalous delay

They, too, had endured a scandalous delay in getting a proper diagnosis years before, but from then on he got excellent care. For example, in primary school, he was in a class with six pupils, one teacher and two special needs assistants.

In his late teens, his mental health began to unravel until he had a serious crisis.

Parents and advocates often find that when mental health difficulties develop, everything is blamed on the autism diagnosis. There seems to be institutional blindness to the fact that people with autism can also suffer from grave mental health issues just like the neurotypical do, but sadly in higher numbers.

There seemed to be insurmountable obstacles to accessing specialised mental health services for their teenage son. One psychiatrist apologetically explained that he knew very little about autism, which they discovered to be an understatement when he interpreted their son’s stimming (self-stimulatory behaviour) as a sign of distress rather than a necessary and even beneficial coping mechanism. (Not all stimming is benign as it can involve self-injurious behaviour but the majority of it, such as hand-flapping, helps a person to self-regulate and navigate overwhelming environments.)

Nor is their story unique. A minority of people with autism find adolescence overwhelming and can suffer catastrophic mental health issues.

Another family with whom I spoke have a highly intelligent son with autism. After a suicide attempt, he was hospitalised but no one in the adolescent mental health unit was adequately qualified to deal with his challenging behaviour.

He was discharged back into his family’s care within days. Even though he was threatening to throw himself from the car, the family were firmly told that he was beyond the unit’s capabilities and that he would have to be taken home.

Another young woman began to suffer from such extreme anxiety during puberty that she could not cope with the presence of others. Her care was mismanaged in the beginning to a grotesque degree. She ended up spending a couple of years in an intensive-care adolescent mental health unit.

Stone walls

Families are left desperately seeking help and are met either stone walls or inadequate responses. The irony is that early diagnosis and intervention would ultimately save the State money. This is true whether it be when children are tiny and most receptive to intervention, or later on when a minority will need tailored, specialised psychiatric intervention.

Instead, supports are being dismantled, with the mental health professionals who do have expertise being diverted elsewhere. Everybody with whom I spoke regarding mental health services praised individual mental health professionals who are qualified, capable, sensitive and caring. But the system is broken.

There is a desperate need for specialist in-patient units with the capacity to manage the minority of young people with autism who have highly complex needs and also require acute psychiatric care.

Instead, in an allegedly progressive, modern country, we are allowing parents to sink beneath the weight of watching their highly vulnerable children being failed and neglected.