Learning Disability Today
Supporting professionals working in learning disability and autism services

Autism: how to cope with puberty

Our teenage years are a time of confusion, stress, anxiety and insecurity for all of us. But what happens when the additional chemistry of autism is thrown into a pot already boiling over with raging hormones?

For autistic teens struggling with weaker social skills and sensory problems, puberty can sharpen feelings of inadequacy and bring a growing awareness of their difference at a time when they just want to fit in.

Research has documented how adolescence, at its most challenging, can result in the onset of epilepsy, bring a fresh wave of regression and, in some cases, contribute to catatonia.

Blogger Jess Owen, 27, from South Wales, says her autism was “exacerbated immensely” during her teenage years due to “social pressure”.

In a message Jess, who blogs here, wrote, “Until then, the unspoken rules by which my peers operated were pretty straightforward; but now friendships became more nuanced, the school hierarchy became more rigid and I had the minefield of romantic relationships to navigate.”

She added, “My sense of identity was evolving — as does a neurotypical teenager’s  —  but I found these changes incredibly difficult to accept and understand.”

Jess, who has a nine-month-old daughter with her chef partner, said her experiences were made worse by “heavy masking”.

Through a desperate attempt to fit in, her identity simply became a “mirror that reflected” those around her. Alongside this her autism also brought difficulties with thinking about and planning her own schedule, including homework and managing money. She said this was also a source of “stress and anxiety.”

Autistic regression and puberty

Autistic regression has focused mainly on how some toddlers will develop normally up to the age of around one before losing many of the skills their parents would have watched them gain.

But Dr Giorgia Picci, of the Boys Town Institute for Human Neuroscience, in Nebraska, co-authored a 2014 study with colleague Dr Suzy Scherf, that suggested regression in adolescence affects 30% of people with autism.

Their review of the existing data on the subject suggested people with autism experience a “marked decline in adaptive functioning during adolescence” that lasts “several years or more”.

The researchers’ paper, titled A Two-Hit Model of Autism: Adolescence as the Second Hit, argues people with autism experience two disruptions to the neural networks of their brains.

The first may possibly happen as early as in the womb. The initial hit leaves people vulnerable to the second impact, which the researchers argued occurs in adolescence. Those affected are more vulnerable to social and emotional problems, difficulties with self-control and anxiety and depression.

Dr Picci said: “The level of depression and anxiety is related to the symptom severity, but not in the way you would think.”

The researcher maintains autistic adolescents who do not have a learning disability are more at risk for depression and anxiety. These teens are more aware of their difficulties and this can create feelings of loneliness and social withdrawal.

The impact can be so severe that even compared to peers with other developmental conditions like Down syndrome, people with autism fare worse on measures like the likelihood of living independently or making friends.

Research in 2010 led by Dr Anna Esbensen, of the Cincinnati Children’s Hospital, showed that while 62.3% of people with Down syndrome have a moderate or high level of independence in adulthood, just 37.4% of adults with autism achieve this.

Picci believes that while efforts have concentrated on the importance of early intervention research also needs to focus on puberty because of its impact on ‘achieving levels of adaptive functioning’.

She has pointed to the University of California run Programme for the Education and Enrichment of Relational Skills (PEERS), which includes dating tips, as one of a small number focused on puberty.

Catatonia in autism

Clinical psychologist Dr Amitta Shah, who is one of the UK’s leading authorities on catatonia in autism, has said the condition often occurs in teenagers after they leave school when structure suddenly disappears.

Alternatively, if they suddenly find themselves in environments where their needs are not understood it can trigger the condition. Adolescence itself, and the hormonal changes it brings, can be a factor, Shah has said.

The condition affects speech, movement and the ability to turn thoughts into actions. Early signs include slower movement, hesitations, loss of speech fluency and deteriorating skills.

In autism, other causes can include side-effects of medications like antidepressants and antipsychotics and stress and anxiety. In its most severe form where people lose the ability to move, even down to chewing and swallowing, it can be life-threatening.

Shah believes the condition is more common in autism than the 12% to 18% prevalence rate suggested by research. She says the condition still goes undetected in the NHS.

In the past catatonia has been associated with conditions like schizophrenia and professionals can struggle to recognise it in autism, particularly in its milder form.

Epilepsy, adolescence and autism

UK research charity Autistica says epilepsy is most likely to occur in autistic people during adolescence. For those without autism, the greatest risk for epilepsy is in the child’s first year of life.

Epilepsy is also much more common in autistic people at 12.1% than in the general population as just under 1% have the condition.

Autistic people who also have a learning disability are more likely to have epilepsy. Scientists have found genes linking both autism and epilepsy and there are a number of genetic disorders linked to both conditions.

Genetic disorders like Rett syndrome, Fragile X and tuberous sclerosis are all linked to the early onset of epilepsy and have features of autism.


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