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Autism: Puberty and sexuality

I’m an enthusiastic patron and supporter of autism projects. But I’m also the mother of Giles who was profoundly autistic and challenging, lost the little speech he had at around 2½ years and never spoke again. I understand and admire the way parents cope with autistic children 24/7, despite stress levels which have been compared with that of a combat soldier.

I’m an expert on puberty – having myself gone straight from puberty to midlife crises, so just starting to get over it.

During adolescence – that psychological and social transition between childhood and scary adulthood, thought to be somewhere between 8 and 18 – the bodily changes, what we call puberty, are unparalleled since infancy. Children grow and put on weight; lose up to 30% of their bone density and may have their first epileptic seizures; girls start menstruation; and both boys and girls grow body hair. Magnetic Resonance Images show the brain changes associated with puberty.

Life’s transitions (always difficult for those with autism) go with roller-coaster mood swings, looping between misery and mania during adolescence. Mental health issues tend to increase at each transitional stage of life. So the support organisations provide is vital to autistic people’s quality of life. Their transitions challenge those who care.

Adolescence is the only problem that disappears if you wait long enough. Think back to the turbulence of your own adolescence. Puberty is probably about as rough as it gets.

But a person’s autism doesn’t conveniently peter out, nor does it stop evolving. Naoki Higashida – author of “The Reason I Jump” – has painstakingly pecked out “Fall Seven Times, Get up Eight” which includes useful insights into how adolescence impacts on autism.

The Autism Speaks charity in the States has a Transition Tool Kit for families on the journey from Adolescence to Adulthood. It can be downloaded for free.

The British Institute of Learning Disabilities has a Quality Network aimed to help young people going through transition to find out what is important to them and for the future. There’s also the international partnership headed by the Hungarian Autism Foundation’s HANDS project (Helping Autism-diagnosed teenagers Navigate and Develop Socially).

Autistic adults are vulnerable but are in general healthy adults and will seek – should be seeking? – sexual encounters and other risky experiences. All developing adults will experiment with new behaviours and so become vulnerable to sexually transmitted diseases, girls being also at risk of unwanted pregnancies. How would we help someone with autism through a pregnancy?

There’s an astounding variety of human sexual behaviours but sexuality is not only sex. Humans have erotic experiences and responses, thoughts, fantasies, values and relationships.

The biological aspects of sexuality largely concern reproduction – and typically emerge in puberty. The physical and emotional aspects of sexuality include bonds between individuals – parental, brotherly and other family links yes, but also the love, trust and care many of us have for our charges.

I believe also in the importance of spirituality – nature, music, art, friendship, love, all the non-material things.

Because I was brought up by foster parents, the nature:nurture debate has always fascinated me. The great Freud believed sexuality was instinctively natural. Others think the mind was a blank slate and it’s your experiences that determine your sexuality.

I guess it’s both nature and nurture. For example, most of my values come from my foster parents, but my essential character is that of my birth father.

There are many serious issues for those legally responsible for young and adult autistic clients.

  • Under Muslim Personal Law, a girl can legally be married once she attains puberty.
  • What should we do if we think a parent might be considering genital mutilation for their daughter? This puberty rite is widely practiced in some cultures. But is illegal in Britain.
  • Do we, should we, teach people the life pleasure of masturbation? Who should teach the need for privacy; and the facts about contraception, pregnancy, sexually transmitted diseases and so on?
  • Would we be happy as our charges grow up if they chose privately to watch pornography?

Are you embarrassed at my mentioning such things?

I wish the best for all those with autism and on their behalf thank you for reading this.

Dame Stephanie Shirley
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