Unit IV: Adolescence & Preparing for Adulthood – planning for transition, self awareness, behaviours, sexuality, occupational
1. Impact of puberty and adolescence on persons with ASD
2. Planning ahead for transition: self regulation, maintaining social proximity,
3. Teaching about the body and understanding own physical changes
4. Sexuality: masturbation, regulation of emotions and needs related to sexuality, & behavioural challenges, prevention of sexual abuse
5. Marriage, Pregnancy, Ageing and Future life
1. Impact of puberty and adolescence on persons with ASD
During puberty, teens experience changes in their bodies, become more focused on who is and isn’t “cool,” and start to experience sexual and romantic urges. These changes can be tough for anyone. But for kids on the autism spectrum and their families, this time can be particularly challenging.
As a guide, puberty usually begins around:
But it’s normal for the start of puberty to range from 8-13 years in girls and 9-14 years in boys.
Changing bodies
Everyone’s body changes during puberty. When boys hit puberty, the voice lowers
in pitch and the penis grows larger. When girls reach puberty, breasts grow
larger, menstruation starts. In both sexes, puberty brings the growth of pubic
and armpit hair and an increased tendency for acne. These changes can be tough
for anyone. But many children on the autism spectrum find these body changes
deeply alarming.
It’s important to talk to your child before these changes happen. On the topic of periods, for example, you’ll want to teach your daughter about using feminine hygiene products. As a parent, you can use tools such as pictures or cartoons to explain to your child the changes happening in his or her body. (See the visual supports section in the Autism Speaks puberty guide.)
In addition, there’s a growing amount of research associating puberty with a new or increased tendency for seizures among those who have autism. It’s important to discuss this with your child’s doctor and learn how to recognize possible signs and symptoms. If you have further concerns, it’s a good idea to meet with an autism-qualified neurologist to talk through your options.
Sexual feelings
During puberty, most people start to experience sexual urges. It’s likewise
normal for children on the spectrum to feel sexually aroused. But for teens
with autism-associated sensory issues, these new sensations can cause anxiety.
Your child might also start to masturbate – also a healthy and normal part of development. However, unlike their typically developing peers, some teens on the autism spectrum lack the social awareness to know when and where it’s appropriate, and when it’s not. As awkward as it may feel, it’s important to discuss this issue with your child. If you’re not comfortable bringing it up, or need assistance on how to start the conversation, talk to your child’s therapist—he or she will be happy to help. (Find tips on how to broach this conversation in the Autism Speaks puberty guide.)
School challenges
Most everyone finds middle school and high school more difficult than grade
school. For children on the spectrum, though, advancing in grades can pose
unique challenges.
For example, if your child is in mainstream classes, his or her teachers will ask for more abstract thinking and expect assignments that can’t be completed through memorization. Many children on the spectrum are fantastic at recall, but struggle with abstract concepts. So be aware that school might get much more difficult and this, in turn, can hurt self-esteem.
During this time, you can work with your child and his therapist to figure out ways to build esteem and a sense of self that aren’t related to grades. His therapist can also help your teen learn to deal with the frustration that comes with having to ask for help.
t can also help to involve the school counselor and teachers in discussing strategies for breaking down information that your child will be better able to understand. Even though classes might become more challenging for your child, his or her school can be an invaluable source of support.
Puberty happens to everyone, and it’s important to make a plan with your child’s teacher, doctor, and therapist for what to do during the critical teen years. With planning and support, you can make this time of changes as smooth as possible.
2. Planning ahead for transition: self regulation, maintaining social proximity,
Self-regulation is a person’s ability to adjust and control their energy level, emotions, behaviours and attention. Appropriate self regulation suggests that this adjustment and control is conducted in ways that are socially acceptable.
Self-regulation development occurs in the following manner:
· 12-18 months is when children become aware of social demands and develop the ability to change their behaviour when a parent asks. In most cases, this early step in self-control requires an adult to be nearby and directing behaviour.
· By 2 years of age, this ability improves to the point where children start to develop self-control, or the ability to follow others behaviour guidelines more often even when mum and dad aren’t around.
· Then by 3 years old, most children can generalise self regulation strategies used from previous experiences. In other words, children will act in ways that reflect how they think mum or dad would want them to act in different situations.
The processes involved in self-regulation can be divided into three broad areas: sensory regulation, emotional regulation and cognitive regulation.
· Sensory Regulation: Allows children to maintain an appropriate level of alertness in order to respond appropriately across environments to the sensory stimuli present.
· Emotional Regulation: Allows children to respond to social rules with a range of emotions through initiating, inhibiting, or modulating their behavior in a given situation to ensure social acceptance.
· Cognitive Regulation: Allows children to use cognitive (mental) processes necessary for problem solving and related abilities in order to demonstrate attention and persistence to tasks.
Ways to improve self-regulation
activities that can help improve self regulation
· Sensory diet to provide sensory feedback to the body which enables better sensory regulation.These activities might include:
§ Wheelbarrow walking
§ Animal walks
§ Trampolining
§ Cycling
§ Swings (forward and back, side to side, rotary)
§ Rough and tumble play / squishing or sandwiching with pillows or balls.
§ Wearing a heavy backpack
§ Weighted items (wheat bag on lap while sitting or heavy blanket for sleep).
§ Chewy toys
· Discrete skills: Activities that have a defined start and end point such as puzzles, construction tasks, mazes, and dot to dots.
· Narrowly focused tasks: Sorting, organising and categorising activities (e.g. card games such as Uno, Snap or Blink).
· Visual schedules enable a child to see and understand what is going to happen next. Schedules also help people to organise themselves and to plan ahead.
· Timers help with transitions as they tell the child how long and when they are going to have to do an activity.Timers also allow us to pre-warn the child when a favoured activity is coming to an end.
· Talking/question counters for the over-talkers: For small discrete periods of time where the child is engaged in an activity, provide a series (maybe 5) of talking or question counters. Each time the child talks or asks a question one counter is removed. When the child has no more counters, adults do not respond and the child learns to hold onto questions and when to ask them.
Children with autism can be taught how to maintain appropriate social distances. Psychologist Scott Bellini, director of the Social Skills Research Clinic at Indiana University, said he uses a type of self-awareness training for this purpose.
"Self-awareness training in our clinic progresses along three levels: self-monitoring, self-regulation, and self-evaluation. The key here is that you cannot regulate or evaluate your own behavior until you have learned to monitor your behavior! I define self-monitoring as keeping track of your behavior. Many behavioral interventions fail because we ask children to regulate or change a behavior that they are not even monitoring. So self-awareness training starts with self-monitoring. We do not ask children to change their behavior at this point, just keep track of it," explained Dr. Bellini, author of Building Social Relationships.
"Once the children are able to monitor their behavior, we then require them to regulate, or change their behavior. The nice thing about this three-level progression is that many kids will automatically regulate their behavior once they begin to monitor it. For instance, if we ask the child to keep track of how many times they violate another person's personal space, they often times begin to regulate their personal space without being prompted to do so," he explained.
The final step involves a child evaluating, or analyzing, his behavior. "This is very, very difficult for children on the autism spectrum. Most parents and professionals can attest to the fact that when you ask a child on the autism spectrum, 'Why did you do that?' a common response is, 'I don't know.' The reason they don't know is because they are on automatic pilot. They are performing behaviors and making behavioral decisions without monitoring themselves.
3. Teaching about the body and understanding own physical changes
Learning about bodies and body parts helps autistic children understand and feel comfortable with their own bodies.
These tips can help you teach your child about all the parts of their body:
When autistic children learn about all parts of their bodies, it can also make it easier for them to learn about their genitals. If you teach your child the names for genitals at the same time as other body parts, your child will learn that these are body parts too, just like toes and arms.
You can build on your child’s understanding of bodies to help them learn about personal boundaries. Personal boundaries are limits and rules about how we behave around others and how other people behave around us.
Personal boundaries include rules about who can touch your child’s body and when. ‘Good touch’ and ‘bad touch’ can be useful ways to explain these rules to autistic children.
Touch can be good or bad depending on the situation. For example, your child’s doctor might need to check all of your child’s body parts, not just the public ones. Another example is hugs. A hug from a classmate is OK, but a hug from a stranger is not.
You might make a general rule that a bigger or older person shouldn’t touch a child’s genitals, which are private parts of the body, without good reasons. Good reasons might include keeping genitals clean – for example, when you wash your child in the bath. They might also include checking that genitals are healthy – for example, when a doctor checks your child.
Likewise, let your child know that a bigger or older person will never need help with their own genitals – for example, while having a bath or going to the toilet.
Visual supports can help you explain these differences. For example, you could use a picture of a hug from a friend with a green tick, and a picture of a hug from a stranger with a red cross. Clear photographs of appropriate behaviour and touching can also help.
Some autistic children don’t like physical contact, and that’s OK. It’s good if they have the ability to express it appropriately.
Along with good and bad touch, you can also teach your child about unwanted touch. For example, if your child doesn’t want a hug from a relative, your child can learn polite ways to say no. These might include just saying ‘No thank you’, holding their hand out to shake instead, or holding their hand up for a high-five.
If you’re worried about offending family and friends, let them know that you’re teaching your child basic personal safety skills, including what to do about unwanted touch.
4. Sexuality: masturbation, regulation of emotions and needs related to sexuality, & behavioural challenges, prevention of sexual abuse
Talking about sex can be difficult for any parent. But for families with adolescents with autism, the topic can be particularly challenging. These teens often lag developmentally behind their typically developing peers. They may need help understanding the basics of consent and figuring out how to set appropriate boundaries. Those who are beginning to explore romantic relationships may need more explicit instruction on the social norms that go along with dating.
Sex education in this group is also important from a safety point of view. Individuals with disabilities, including autism, are at greater risk of sexual assault and abuse. Sex education has been shown to help mitigate that risk.
Sexuality is more than sex. It’s also how your child:
Sexuality is essential to healthy overall development.
Autistic teenagers develop sexually in the same way as other teenagers do, but they might need extra help to build the social skills and understanding that go along with sexual development.
Your child will be more or less interested in sex and sexuality – just like other children the same age. Your child can develop romantic relationships too, which might or might not be sexual.
Some teenagers are sexually attracted to people of the opposite gender, some are attracted to people of the same sex, and some are bisexual.
Sexual attraction and sexual identity aren’t the same. Young people who are same-sex attracted might or might not identify as gay, lesbian or bisexual. They might identify as heterosexual.
Many autistic teenagers can find it hard to understand sexual feelings – in themselves and others.
You can build your child’s understanding by helping them break sexual feelings down into thoughts, body sensations and behaviour. For example, if your child is sexually attracted to someone, they might have:
You could use social stories or visual supports to talk with your child about sexual feelings.
It can also be hard for autistic teenagers to express sexual feelings. If your child does find this difficult, they might be more likely to do inappropriate or risky things or get into unhealthy relationships. These ideas can help:
As your autistic child goes through puberty and learns about sexual feelings, you’ll need to talk with them about sexual relationships.
It’s important for your child to know that sexual relationships are a normal part of life, but your child doesn’t have to have sexual relationships if they don’t want to. They don’t have to have sex to be popular or because their peers say they should.
Your child also needs to learn about sexual cues from other people. When your child knows how to interpret other people’s sexual cues, it can build your child’s confidence, keep your child safe, and prevent your child from unintentionally harming others.
Explaining sexual cues can help. For example, ‘Someone might be interested in having sex if they’ve been kissing or touching you and then invite you into their bedroom. If you want to have sex with them, you must ask them if they want to have sex. You must not do anything the other person doesn’t want to do’.
And if your child is sexually active, these essential steps can protect your child’s sexual health:
You and your child can get advice about sexuality and sexual health from several places, including the GP. You can also tell your child that they can ask you anything. But if you think your child would be more comfortable talking to someone else, a sibling, friend or other family member could also be an option.
In every intimate sexual situation, the most important things for your child are consent and safety:
Masturbation is a natural activity for children going through puberty.
You can let your autistic child know that masturbation is normal – but encourage your child to masturbate only in a private place when they’re alone. It might help to compare masturbating to other activities that your child does in private, like having a shower or going to the toilet.
You might need to help your child recognise private places. A private place is somewhere in their own home where other people can’t see them. You might also need to make a list of private places with pictures or photos.
Here’s an example of a list of private places for your child:
You could also put a ‘private’ sign on the door of your child’s private place in the house – for example, their bedroom. But do make sure that your child understands that if another room – for example, at school – says ‘private’ on it, it doesn’t mean that it’s a suitable place to masturbate.
You might also want to make a rule that people should knock on all bedroom doors before going in. Make sure that everyone who visits your home knows the rule.
Here are some specific tips for parents to
think about in the sexual health education of their child:
5. Marriage, Pregnancy, Ageing and Future life
Despite the increase in diagnoses of autism spectrum disorder in adulthood, there is a striking gap in our understanding of how to support quality of life for autistic adults.1,2 Thus, advancing research and clinical practice relevant to the lived experiences of autistic adults is a critical research priority.3–5 Despite growing evidence suggesting that autistic adults may benefit from additional support around transition periods, little empirical research has considered how autistic adults experience pregnancy and parenting. Pregnancy and the transition to parenthood are critical windows for adult health. Given the myriad biopsychosocial changes associated with becoming a parent, this transition period greatly influences health trajectories, and known disparities in later health outcomes may be linked to risk factors originally emerging during the perinatal period. Moreover, ongoing experiences of parenthood are a critical aspect of quality of life and family functioning, given that parenting behaviors are associated with parents' own well-being as well as multiple aspects of child development and the family environment.
Although research has considered how broad disability status relates to pregnancy, little research has considered autism in particular. For example, several critical studies have studied pregnancy and parenting outcomes among women who report any of a range of intellectual or developmental disabilities, and have found higher rates of preterm birth, low birth weight, and stillbirth, longer hospital stays and higher rates of cesarean delivery, more postpartum hospital admissions and emergency department visits, and over-representation within the child welfare system. Although this foundational research on intellectual and developmental disabilities can inform hypotheses about the experience of pregnancy and parenthood in autism, the majority of these studies included women with a diverse range of diagnoses together as one group and little research has considered the specific and unique experiences of autistic adults. In fact, recent research on the life experiences of autistic women has highlighted that there is “virtually no” empirical research on many concerns central to women, including reproductive health and parenting. Understanding pregnancy and parenthood are important for autistic adults of all gender identities. Whereas sex is defined by the World Health Organization as referring to biological and physiological characteristics, gender encompasses experiential, social, and cultural components, including gender identity, or the internal gender a person experiences themselves as. Sex and gender are both dimensional and nonbinary, including experiences of having components of both, neither, or fluidity of the binary genders (“male” and “female” binary categories).
Despite the lack of research among autistic adults specifically, some existing work has considered pregnancy and parenthood in relation to subclinical autistic traits, which may be informative for understanding the experiences of autistic adults. Subclinical autistic traits are commonly referred to as the broader autism phenotype (BAP), which includes personality characteristics qualitatively similar to autism that fall below the threshold for meeting formal diagnostic criteria (i.e., pragmatic language differences, rigidity, and aloofness).23 BAP traits predict increased risk for maternal postpartum depression. Regarding parenting style, mothers with higher autistic traits use a more permissive parenting style with their nonautistic children, although not with their autistic children.