Parenting tweens, teens and young adults with autism spectrum disorder (ASD) – help, hope and guidance.

Today’s article is written by Philippa Fabbri from Education Services

April is Autism Awareness Month, a time where South Africa and the world alike, unite to raise much-needed support for ASD. While we are actively engaging in awareness campaigns, the people who need our support are often the parents of children with autism spectrum disorder.

WHAT IS AUTISM SPECTRUM DISORDER?

In 2013, the American Psychiatric Association merged four distinct autism diagnoses into one umbrella diagnosis of autism spectrum disorder (ASD). They included autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.

Doctors have defined autism spectrum disorder (ASD) as a neurobiological developmental condition that can impact communication, sensory processing, and social interactions. Autism Spectrum Disorder is a lifelong, extremely complex developmental condition that appears to occur as a result of multifactorial environmental triggers interacting with a genetic predisposition.

PREVALENCE

As of March 26, 2021, the Centers for Disease Control and Prevention (CDC) report that among 8-year-old children, one in 54 are autistic and it affects 4 times as many boys as girls, but most recent stats put the estimate as one in 44. Dr Neil McGibbon, a Cape Town-based clinical psychologist who works with teenagers on the spectrum, believes that “there have been some recent indications that girls might have been overlooked in error and as a result not sufficient research done”. This is because the autism spectrum looks different in girls. Vicky Lamb, the national education facilitator of Autism South Africa, estimates that about a million people in South Africa have autism, based on global statistics. However, she added, there are not “enough professionals in the country who are able to make a diagnosis”. This shortage of trained professionals means only some of the South Africans with autism will actually be diagnosed. The onset of ASD is from birth or before the age of 3 years.

SYMPTOMS OF AUTISM

Autism affects how an individual perceives the world and makes communication and social interaction different from those without autism, often leading to significant difficulties. ASD is characterized by social-interaction challenges, communication difficulties and a tendency to engage in repetitive behaviors. However, symptoms and their severity vary widely across these three core areas, also known as the “Triad of Impairments”. Some of the more common traits are listed below:

1. SOCIAL INTERACTION

• Little awareness of others, or of their feelings;
• Poor or absent ability to make appropriate social contact;
• The most severe form is aloofness and indifference to others, although most show an attachment on a simple level to parents or carers;
• Indifference to or dislike of being touched, held or cuddled;
• Difficulty in forming relationships;
• In less severe forms, the individual passively accepts social contact, even showing some pleasure in this, though he or she does not make spontaneous approaches;
• Prefers to play alone

2. LANGUAGE AND COMMUNICATION

• The development of speech and language may be abnormal, absent or delayed;
• Minimal reaction to verbal input and sometimes acts as though deaf;
• Facial expressions and / or gestures may be unusual or absent;
•  Repetition of words, questions, or phrases, over and over again;
•  Words or phrases may be used incorrectly;
• Production of speech may be unusual and a flat monotonous tone or inappropriate variations in tone are often noted;
• Those who are verbal may be fascinated with words and word games, but do not use their vocabulary as a tool for social interaction and reciprocal communication;
• Difficulties in starting and/or taking part in conversations.

3. BEHAVIOUR AND IMAGINATION

• Imaginative play may be limited or poor, e.g. cannot play with a wooden block, as if it is a toy car;
• A tendency to focus on minor or trivial aspects of things in the environment, instead of having a full understanding of the meaning of the complete situation;
• May display a limited range of imaginative activities, which you may well find have been copied off the TV etc.;
• Pursues activities repetitively and cannot be influenced by suggestions of change;
• Play may appear complex, but close observation, shows its rigidity and stereotyped pattern;
• Unusual habits such as rocking, spinning, finger-flicking, continual fiddling with objects, spinning objects, feeling textures, or arranging objects in lines or patterns etc.;
• Inappropriate use of toys in play;
• Holding onto objects, e.g. carrying a piece of wool for the whole day;
• Noticeable physical over-activity or extreme under-activity;
• Tantrums may occur for no apparent reason;
• Changes in routine or environment, e.g. a change of route to the shops, or altering the position of furniture within the home, may cause distress;
• Interests and range of activities may be limited, e.g. only interested in puzzles;
• A small percentage of learners have abilities that are outstanding in relation to their overall functioning, e.g. exceptional memory in a specific field of interest.

 In addition to this “Triad of Impairments”, you may well observe the following additional features:-

• Little or no eye contact;
• No real fear of dangers;
• Abnormalities in the development of cognitive skills, e.g. poor learning skills or resistance to normal teaching methods;
• Abnormalities of posture and motor behaviour, e.g. poor balance;
• Poor gross and fine motor skills in some learners;
• Odd responses to sensory input, e.g. covering of ears;
• Sense of touch, taste, sight, hearing and/or smell may be heightened or lowered;
• Bizarre eating patterns – food fads;
• Unusually high pain threshold;
• Crying or laughing for no apparent reason;
• Self-injurious behaviour, e.g. head banging, scratching, biting;
• Abnormal sleep pattern.

Sensory processing disorder has also been highlighted as one of the symptoms of autism spectrum disorder and as many as 90% of children with Autism Spectrum Disorders (ASD) demonstrate atypical sensory behaviors.

MEDICAL AND PSYCHIATRIC ISSUES THAT MAY ACCOMPANY AUTISM

Children and adults with ASD usually have accompanying learning difficulties. The range of intellectual abilities amongst children with ASD is vast and the presence of additional disorders such as epilepsy, sensory and intellectual impairments can also co-exist with ASD. It is also suggested that autism shares a genetic basis with several major psychiatric disorders, including attention deficit and hyperactivity disorder (ADHD), depression, bipolar disorder, anxiety and schizophrenia, often resulting in over-diagnosis of these psychiatric problems due to overlap between autism symptoms and those associated with psychiatric disorders. Therefore, it is critical to receive accurate diagnoses of these conditions because medication or therapy to treat them may significantly improve autism symptoms and quality of life.

DIAGNOSIS

The American Academy of Pediatrics recommends that all children get screened for autism at their 18- and 24-month exams – and of course, whenever a parent or doctor has concerns. A parent can complete the Modified Checklist for Autism in Toddlers-Revised (M-CHAT-R™). It takes a few minutes to assess the likelihood of autism and the results can be shared with the doctor or paediatrician, as part of a complete and comprehensive assessment.

There is no single tool available to make a quick diagnosis for ASD. It is imperative that an in-depth developmental history be taken and that the individual be observed over a period of time in both structured and unstructured as well as familiar and unfamiliar situations. It is preferred that a concerned parent or caregiver consults with a developmental pediatrician, child psychiatrist or pediatric neurologist.

MANAGEMENT

Autism is often treated differently in adults than in children. Applied Behavior Analysis (ABA) and Cognitive Behavior Therapy (CBT) are just two of the therapies that can be used to help and manage children on the spectrum, and in some cases, adults. Far more research has gone into effective treatments for children with autism, but as the population of adults on the spectrum continues to rise, more studies are beginning to focus on the best ways to help.

Many researchers emphasize that the most effective interventions are those that can be adapted to an individual child. Children have specific developmental goals — related to language, say, or social skills — and start at various developmental levels. “Interventions are not one-size-fits-all,” says Lynn Koegel, clinical professor of psychiatry and behavioral sciences at Stanford University in California, who is one of the creators of PRT. Pivotal response treatment (PRT), is applied during play and specifically targets pivotal areas of development, such as motivation and self-management, rather than specific skills.

“We need more research into systemic barriers to diagnoses and medical approaches for autistic people, and research that incorporates autistic and neurodivergent perspectives on how to accommodate autistic patients” writes Shannon Des Roches Rosa, senior editor at Thinking Person’s Guide to Autism, who has a son on the autism spectrum. She stresses that “researchers should prioritize autistic perspectives when looking for guidance or considering direction” for treatment and management programmes.

FINAL WORDS

Neurodiversity is the diverse spectrum of neurology where we all fall somewhere on the neurological spectrum. Some people are gifted, some are artistic, some don’t communicate verbally. The biggest thing to consider and be aware of, is that autism is also a spectrum, from those severely disabled to those who simply see the world differently. There is a large group of people who are neurotypical, and also many people who are neurodivergent. We are all different, we all fall somewhere on the wide neurodiversity spectrum, and we all deserve the same supports and accommodations.

SOME PARENT CONCERNS AND FAQs

How do I tell the difference between a tantrum and a meltdown?

Meltdowns and tantrums can often look the same on the outside, but thatʼs where the similarity ends. A tantrum is a voluntary battle of wills to try and gain control over a situation. It’s designed to draw attention for the sole purpose of satisfying a want (like refusing to leave the supermarket without candy), so once that goal has been met, the outburst quickly resolves itself.

Meltdowns on the other hand are almost the complete opposite – an involuntary physical and emotional reaction to being placed in an overwhelming situation from which there is no easy escape. The person isnʼt in control or trying to get attention, in fact theyʼre often unaware of things happening around them.

Anybody can have a meltdown – child or adult, neurotypical or autistic – if they find themselves trapped in a situation that is difficult to cope with. For more information, click HERE

How do I discuss puberty and sexuality with my ASD teen?

Many teens with ASD may experience the sensations of a physically mature body without the social, emotional or psychological maturity to understand these sensations. It is important to give your child time to process the idea of his or her body changing before puberty actually starts. Boys will typically show signs of puberty around the age of 11 or 12. Girls usually experience changes in their bodies earlier, around the age of nine or 10.

For girls who are beginning menses (menstruation or periods), it is helpful if the caregiver can see a doctor who specializes in adolescent care and birth control BEFORE the actual event occurs. Did you know that they make underwear specifically designed to help keep menstrual pads in place and more comfortable? This is KEY when you are looking at young women who have sensory issues to begin with and who may not fully understand what is happening in their bodies during menstruation, or how to have appropriate hygiene.

With puberty come sweat, oily skin, and pimples. Bathing or showering daily to keep their bodies clean becomes more important. Often, children with ASD are not aware of the social impacts poor hygiene may create, so chat about why he or she needs to bathe more frequently.

If getting your child to become motivated to bathe is a struggle, you may need to introduce daily bathing as a “new house rule”, provide visual checklists and reminders to bathe, wash thoroughly, use soap and shampoo, etc. At this age, it may be increasingly hard for you to monitor how well your child is washing his or her body – another reason to teach independent bathing early.

Teaching kids about shaving can also be extremely tricky, especially if your child struggles with tactile sensations. You will need to teach your child how to shave safely, as pain or even a cut may lead to future avoidance. This may be an area where children require assistance until you feel confident that they can shave safely on their own.

Try different razors and shaving creams to find one your child prefers and accepts. Often, an electric razor is a better option for teenagers just starting out. Keep in mind that some people with ASD may be sensitive to the sounds of electric razors. If your child is very averse to shaving, you may need to work on increasing his or her comfort level first. To do this, start gradually with single steps (i.e. put on shaving cream and rinse off), short periods of time (i.e. turn razor on for 5 seconds and then off), or small areas (i.e. put on shaving cream and shave a small area). At first, your child may only tolerate these small exposures. Gradually work your way up and be patient. If shaving is not an option, these same incremental steps could be used with depilatory creams, which may have less of a sensory impact and require less fine motor skills.

Occupational therapy (OT) focuses on self-care, productivity and leisure. For children transitioning into young adulthood, occupational therapy could include: establishing independence in hygiene, dressing, sleeping, sexual health, completing chores, volunteer or paid work and socializing with friends, peers, co-workers or family. Occupational therapists work collaboratively with children and their families to set goals and strategies tailored to meet your family’s specific preferences.

Puberty and adolescence are times of body transformation and increased sex drive for individuals with and without ASD. Body exploration, sexual attraction and masturbation are all natural aspects of growing up and maturing. As we mentioned earlier, intellectual and social maturity do not necessarily go hand in hand with physical maturity: your child may experience real sexual impulses without fully understanding or knowing how to cope with the sensations. Conversations about sexuality are often uncomfortable for parents, but it is important to help guide your child toward appropriate behaviors and outlets.

Tough conversations often feel easier when you’ve planned ahead. Here’s a script to help get you started. Remember to speak clearly and adjust your language according to your child’s verbal skills and level of understanding.

“It is important that you know there are places on your body that no other person should touch in a sexual way until you are both mature adults. These body parts are called “private parts”, and they include your [breasts, vagina, penis, etc.]. If anyone touches you on your private parts, you have to tell me – even if you don’t want to, and even if the person who touches you is an adult or a friend from school that tells you not to tell. If someone makes you feel uncomfortable and gets into your personal space, tell them “NO”- to stop, and then tell me.”

How do I help my teen to find friends and socialize?

Consider your child and how they fare in social conversation. Do they appear shy and withdrawn or do they tend to dominate the conversation? The child who seems shy and withdrawn and rarely speaks unless spoken to, wants to feel welcomed and included but often doesn’t know where to begin. On the other hand, the child who can talk at length on their topic of interest, may assume that everyone has that same level of interest…both do not understand the mechanics of social conversation.

Depending on your child and what works for them, you can use the following analogies to explain the “art” of conversation:

An orchestra is made up of different people all playing different instruments and sometimes someone has the opportunity to play a solo. When that happens,the other musicians play quietly in the background or they stop playing altogether so that the one musician can be heard clearly.

When a group gets together to learn a dance, they need to first learn the steps before they can put it all together to make a performance. Some will take longer to learn the steps and others will learn the steps more quickly, but at the end, the group performance is made up of everyone’s steps, just like a conversation is made up of 2 or many people’s contributions.

If your child has a favourite cartoon character, you can create a social story using the characters and how they interact with one another.

Use a “bag of tricks” consisting of conversation starters such as “How’s it going?”, Hey, what’s up?” or “How was your weekend?”. Some sample conversation endings could include “I have to leave now” or “I’ll see you later in the week”. Again, use their favourite TV programme or cartoon to try and come up with their own ones. See if they can identify any on their show. You can also include feedbacks and slip ins like “That’s cool, tell me more” or “I’ve never heard of that, but it sounds interesting”.

For more tips on how to help your child with socialization and making friends, go to this blog entry called “An Autistic Teen Girl’s Tips on How To Make and Maintain Friends”.

How do I help my teenager to manage his/her emotions appropriately?

Kids experience lots of stress, as they become pre-teens and teenagers. This stress can sometimes present itself as challenging behavior, and for some as aggression. Parents can be surprised at the changes their kids undergo.

For pre-teens and adolescents with ASD who are developing, the challenges can be even greater. They may be experiencing new stress at school. They could also be experiencing hormonal changes to their body that happen as they are going through puberty. Many kids with autism have more social opportunities early in elementary school than they may have later on. This can create stress or sadness, too.

When we think about the ways that our kids with ASD express themselves, it’s important to think about how this happens at different times. Most of us are better at expressing our feelings when we are calm and feeling well. When we get upset, we don’t express ourselves as well, at all. It’s hard to think of the right thing to say and the right way to say it when you are really upset.

When kids with ASD get upset, managing their own reactions and expressing themselves well can be a real struggle. They may react inappropriately and for some, this can become dangerous. Kids who can’t communicate verbally may lash out physically and may even self-harm or hurt themselves. Many parents are the “safe” person for their child and while it’s good to avoid aggression in public, reinforcing the wrong behavior creates great stress.

In puberty, kids experience different emotions in a more intense way and so they may need more or perhaps different strategies to manage these feelings.

Here are 7 ideas that might help:

• The earlier you start, the better things may turn out. Even young children naturally find activities to help them when they are upset. Parents need to be aware of their child’s go-to activities and how he or she can access them during tough times.
• It’s much easier to prevent a meltdown than to handle it when it’s happening. This means adjusting your schedule to make sure the stress your child experiences is reasonable. It’s important to expose kids to some stress, so that they can learn how to manage it – but this needs to be at a reasonable level.
• Keep working with your child to find strategies to help avoid the meltdown. For verbal children, you can talk about things they can do to soothe themselves when they start to get upset. This might be a favorite stuffed toy, listening to music or taking time by themselves. They can give you some ideas. For nonverbal kids, parents need to develop a list of things that are soothing and to have these available on short notice.
• Share strategies with your child’s school. For example, if your child has a hard time in the grocery store, think about a job he or she could do (like pushing the cart), an enjoyable activity (like a video game) or a reward to look forward to (like a fun activity when you get home). When you think of these in advance, you can plan better than when your child is having a meltdown in front of you.
• Don’t be shy to use positive reinforcement to prevent aggression.
• Make sure you have support. If your child becomes physically aggressive, make sure you have the support you need to minimize the risk to yourself and to him or her. Special training in nonviolent communication and safety strategies may be very helpful to you and your teen to help keep everyone safe during an aggressive episode.

References:

https://aut2know.co.za/wp-content/uploads/Doctors-Brochure.pdf

https://aut2know.co.za/wp-content/uploads/2022/03/WAAD-2022_15-March-2022_FINAL.pdf

https://aut2know.co.za/wp-content/uploads/TheSuperUsefulGuideToManagingMeltdowns.pdf

https://aut2know.co.za/wp-content/uploads/Low-support-needs-ASD.pdf

https://www.autismspeaks.org/tool-kit/atnair-p-puberty-and-adolescence-resource

https://www.autismresources.co.za/pages/all-about-autism

http://www.cara.uct.ac.za/home-277

https://doi.org/10.53053/TQQE6304

https://www.spectrumnews.org/news/early-interventions-explained

https://www.webmd.com/brain/autism/ss/slideshow-autism-overview