Autism is a neuro-developmental disorder that affects 1 out of every 60 children. The condition has considerable implications for many families and friends. Bystanders often judge the behaviour of these children and their parents. Lieze (pseudonym) has an adult son with Autism, and she agreed to share her experiences with us.
Lieze, thank you for sharing your experiences with your son, Herman (pseudonym) who lives with autism. Will you please tell us how old he is now?
Herman is turning 31 this year.
We know that autism is a spectrum disorder, and I use the word “disorder” cautiously because we all know “normal” is very relative. Where on the spectrum does Herman find himself? What is the formal diagnosis?
As you say, Miemie, definitions are problematic as they are all relative. The word “spectrum “also does not have defined “bottom” or “top” ends. I would say that he falls somewhere in the middle of the spectrum. He has diminished intellectual abilities and needed specialised schooling. Even though he attended a school for children with Autism, it did not improve his intellectual development. He learned more about letters and numbers from occupational therapy than from specialised schooling. However, he retains many stories, songs and behavioural and social “rules” from the school environment. Although he recalls rules verbatim when asked, he seldom applies them or transfers them from one situation to another.
He is fortunately verbal, which helps determine his level of understanding. Like many people with Autism, he has areas of remarkable ability and areas of inability. He cannot count. He can recite numbers from 1-10 but has no concept of relative quantity. To him, it is either one or many. He also has difficulty with executive brain functioning. Herman cannot plan, analyse, and make decisions. He learns processes in steps that he memorises through repetition and rote learning. It has improved as he aged, and he can remember the order of steps in a process. He cannot read, although he can identify the separate letters of the alphabet. Herman recognises some words based on an “image” of the word. He knows all advertised brand symbols. Herman has an exceptional memory for people, names, difficult words, places, lyrics of songs and bird sounds. His auditory memory is excellent.
Because of his varied functionality, we do not have a formal diagnosis. However, he is without a doubt on the autistic spectrum.
Autism is often accompanied by several comorbidities such as attention deficit (ADHD and ADD), depression, intellectual disability, anxiety, and obsessive-compulsive disorder (OCD). Does Herman have any of these comorbidities?
Herman has comorbidities. Of those, you list, ADD, intellectual disability, anxiety and OCD are all present. Herman’s story started with abnormalities at birth. We realised that the road we were on would not be straight and “normal”.
Herman was born full-term with a chromosomal abnormality that shows an extra strand of genetic material on the 9th chromosome. He was born with two conditions, diagnosed within the first three weeks. Hypospadias is a condition where the opening of the penis is on the underside rather than the tip.
He was also diagnosed with Congenital Glaucoma, which means that the ducts that control the pressure in the inner eye did not develop. It is a rare condition in children. It required operations when he was three weeks old. We heard that he could be blind and that the chromosome abnormality could lead to various other abnormalities. The cause of the abnormality is hereditary.
We did a chromosome analysis on both parents. It emerged that there was a balanced translocation of genetic material on my side. Part of the 8th chromosome was attached to the 9th. It meant I had all the material in balance to function normally. However, in Herman’s case, he inherited only half of the chromosome pair with the extra material. His condition is not a specific syndrome. Genetic research could not find identical chromosome patterns in any internationally scientific database. Therefore we had no indication of what abnormalities or comorbidities to expect.
Most of us do not understand the true implications of all these terms. Can you explain exactly what this diagnosis means for Herman and for your family? What are the practical implications?
Regarding the comorbidities you listed, the most prominent are intellectual disability, anxiety and OCD. I explained the intellectual disability partially above. It was also noticeable in the way he acquired language. He began naming words as toddlers do but had difficulty constructing sentences. Herman became more fluent by memorising appropriate sentences and expressions rather than string words together independently. He has a strange relationship with language. Herman can remember complicated and abstract terms. He can quickly reproduce them in an appropriate context. However, he has no understanding of their real meaning.
His visual memory is also excellent. He recognises bird species in birding books and recalls their names. By the age of 4, he knew approximately 200 species visually and could identify their calls. My husband taught him the capitals of countries around the world. He can name these when we prompt him with a country, irrespective of his ignorance of what a “capital” is. He also sees pictures in his mind, although he has a low muscle tone and cannot draw. We must draw weekly, and he gives us instructions. These commissioned works are often challenging to execute, especially for an unartistic mother. He asks us to draw inside and outside of buildings simultaneously. We also draw sounds and feelings.
(I have seen some of these artworks and am impressed with the skills of both mother and father.)
Anxiety is part of his life and lies at the root of many of the behavioural problems he displays. He becomes very anxious in unfamiliar and unpredictable situations or strange environments when he does not understand what is happening. Herman does not like changes of routine or surprises. He also fears sudden loud noises. It would often result in a panic attack and emotional meltdown. In the worst of these meltdowns, he would push and shove, physically threaten us, and scream uncontrollably. A severe meltdown could last from 5 to 15 minutes. Initially, he would start shaking, become pale and then become physical.
Expectations of events, dates and celebrations make him very anxious. Christmas, New Year, Easter, and Birthdays are usually a nightmare because he cannot handle the emotional excitement and the anticipation for something to happen. He loves visiting our friends, but getting out of the car and the first 10 minutes or so is an ordeal until he calms down.
OCD manifests in different ways. Initially, it became noticeable in repetitive questions or words. Even when I responded, he would keep addressing me repeatedly, “Mamma, Mamma, mamma “. Herman would repeat the same question 5 or more times even if we provided an answer. He also gets obsessed with particular themes or items and asks the same questions for weeks on end. Between the ages of 5 and 6, he started obsessively closing cupboard doors and drawers that were open. Unpacking the dishwasher is a challenge for us! He also began straightening toys and objects at an angle (Mr Monk comes to mind!)
Research shows that symptoms of autism can be detected before 2 to 3 years of age. When did you notice for the first time that Herman was “different” and what were the signs that troubled you?
We were somewhat prepared and noticed differences in development and behaviour. Herman was a very colicky crying baby, had difficulty feeding, and initially did not thrive. It improved at about four months, but he was slow in reaching developmental goals. He started walking only at 19 months. His language development started fairly early at about 16 months but followed an unusual pattern. We realised that he was slow and, in many ways, different from kids his age, especially when he started to go to nursery school at the age of 3. Although we, teachers, neurologists, therapists, and psychiatrists, acknowledged that he was different, Autism was not mentioned as a diagnosis.
Early on in nursery school, we had him observed by specialists in Autism, but they did not think that he was autistic at that stage. Later we moved him to a nursery school for children with special needs as the teachers at the mainstream nursery school started finding it difficult to accommodate him in a regular preschool class.
As parents we often do not know where to obtain the information and assistance that we need when we are concerned about our children. Often it takes a long time before we have the necessary answers to understand and find the specific support that our children need. How did you find your answer, how long did it take you to get a result, and who confirmed it?
We were exasperated with medical tests and procedures. Since we are both academics, we did research ourselves and spoke to people we thought were knowledgeable. Mainly through social observation and talks with occupational and speech therapists, we got a picture of Herman’s abilities and shortcomings. During a horse-riding therapy stint, the therapist brought me a book on Asperger’s by Tony Attwood. It described several typical behaviours and characteristics that she had observed in Herman. After reading the book, we considered the possibility of him being on the autistic spectrum. At that stage, we were so tired of doctors and therapists. They would do endless tests and conclude that he was different and disabled in ways. But they could not give us a diagnosis. We decided to accept that he is different and play it by ear.
When he moved to Grade 1, it became apparent that he could not function in a group. He could not follow group routines, nor could he follow the curriculum. We made another appointment with a school for autistic learners. Various diagnostic tests were conducted, and our suspicions were confirmed. Herman was indeed autistic but not at the high end of the spectrum that would qualify him as a person with Asperger’s. He was eight years old by then. When we saw the autistic children in the class, we recognised many mannerisms and behaviour patterns that we were familiar with. We felt that he was where he belonged.
As a parent I cannot even imagine how it must feel to hear that your child has a severe neuro-developmental disorder. Initially it might be a relieve to finally know what you must deal with but then you must live with the daily practicalities of the disorder. Apart from that you need to come to terms with your new reality. I know that grief can be all-consuming, and it never stops, although it changes with time. Would you care to share with us how you felt after the diagnosis was confirmed?
We finally had positive confirmation of the nature of Herman’s disability, when he was eight years old. Our feelings were not shock or grief. It was an academic confirmation of a reality we had lived with for eight years. He was still the same child he was a week ago, a year ago, in fact, all his life. Our emotional roller-coaster experience and stress were earlier on when he was a baby, and we realised that his life and our life would not be easy.
At that stage, my personal feelings as a mother were that I had failed to produce the “perfect baby” according to societal norms. I had feelings of guilt towards my husband and family when it became clear that my genetic material caused his disability. However, in a matter of months, we decided that this was the hand dealt with us. We must make it work somehow. This resolve was strengthened when I fell pregnant again, and our daughter was born when Herman was 19 months old.
We had a good marriage, and I realised I wanted both our kids to grow up in a happy home. It was up to us to accept this reality and make it our “normal”. However, having decided this did not destroy the hope that someday, by some miracle, he would catch up in his development and become a self-sufficient human being. The realisation of his condition’s permanence and inevitability came over time.
The realisation slowly dawned that what Herman had achieved mentally and emotionally at the age of about ten was what it would be for the rest of his life. He will always be dependent on us, and that there was nothing we could do to change the situation. We had to accept it and make the best of it. In a sense, it was a feeling of liberation to stop chasing after therapies, solutions and cures.
Support from others is the one thing that empowers us to persevere in challenging situations. Did you have support? Where and how did people support you?
Our support came primarily from our parents and good friends. Parents who accepted the situation and helped logistically as much as possible supported us to continue our careers and post-graduate studies. Good care facilities enabled us to carry on working, which was therapeutic. For several hours a day, our demands were different, and our minds focused on other issues.
Our friends were all supportive and, to this day, accepted Herman as part of us as a friendship unit. We tried, but formal support groups were not where we found our solace. We found this in understanding, supportive, and loving individuals.
I realised early on that people were uncomfortable in coping with us as a family. They did not understand what to expect from a child with Autism and did not know how to interact with Herman sensitively or comfortably with us. It occurred to me they would take their cues from us. If we acted normally, spoke about the issues, and involved Herman in social situations without appearing stressed and uncomfortable, others would also model this attitude. It proved to be the case. We would explain and sometimes even joke about strange behaviour and apologise when it got bad. A sense of humour helped here.
Our family, friends, caregivers, therapists and teachers have been our invaluable support structures over the last 30 years.
Autism is a life-long disorder that cannot be cured. However, therapies such as behaviour intervention, occupational and speech therapy, social skills training, and certain medicines may improve the functioning of some people with autism. Were there any therapies that made a difference for Herman?
We found the weekly sessions with an occupational therapist helpful. Several years of physiotherapy were valuable. Herman has not developed fully physically and, at the age of 30, still wears clothes for 15-year-olds. It, however, is not linked to Autism as such, but probably to his genetic abnormalities. The therapeutic principles followed in a structured and routine environment helped him and still create order in his life. (He is currently in a Centre for adults with Autism during the week). We tried speech therapy, horse-riding therapy, specialised computer courses and music therapy, all of which were enjoyable to him but did not have a noticeable impact on his development. He has a passionate love for music, and this we encouraged at home, listening to music, singing, and dancing with him. It gives him great pleasure and often is a means to defuse anxiety and stress.
You also have a daughter? How old is she?
Mary (pseudonym) is 29.
I know that this is a difficult question and perhaps one that your daughter rather must answer. How do you think did the fact that you have a special needs child impact on your relationship with your daughter?
It indeed had an impact on our side. Mary was born when Herman was 19 months old, so it was like having twins for quite a while, especially when they were toddlers. He was slow in reaching development goals, and she was ticking the boxes on time. When we battled to potty train him, she removed her diaper and put it in the rubbish bin, then fetched me from the kitchen to show me. Very soon, Herman saw her as the older sibling and adored her. At times she could get him to cooperate with activities that we could not.
We tried to shelter her from feeling “responsible” for him and did not involve her in his physical care. With Herman being autistic, their relationship was not close and cuddly, and his behaviour sometimes caused her embarrassment. It was more evident in primary school when it was probably difficult for her to understand why he was different, and she did not have the vocabulary to explain to school friends. She did not seem embarrassed to have friends over, and although he never joined, he enjoyed their presence.
Later in high school, she had an active social life and could understand and explain better. We spoke about his disability to our friends and hers openly. Most of them grew quite comfortable with his quirks. Again, humour helped. If we laughed at something strange that happened, they felt pleased to join in and ask about the odd behaviour.
Our daughter was a significant “stabilising” factor in our family as we could focus on her as a person and her needs. It gave us a sense of normality. She became emotionally independent and self-sufficient at an early age, and after leaving school for university, she never lived at home permanently again. We missed her very much initially but understood that she needed to find an identity of her own and encouraged her to do so. We were a family unit, although not an “ordinary” one.
(Mary’s response to this question)
I would say that having a special needs sibling impacts the relationship between my parents and me to an extent. One of the perceived downsides is that I felt a constant pressure to perform. Whether this was subconscious or self-imposed, I did experience (and still do to an extent) a feeling of being a ‘good’ or ‘normal’ child to compensate for the lack of ‘normality’ they experienced with my brother. This feeling added a lot of anxiety. I felt any failures (or any inability to achieve) would be an added burden to them (even if this was not the case from their perspective).
One of the positives was that we had a special bond as the ‘normals’ in the family. Something that very often happens in families with a special needs member is that the ‘special needs’ factor becomes all-consuming. Everything revolves around the special family member, and everyone focuses on their needs. It is understandable, but it comes to the point that having a special needs child becomes the parent’s entire identity.
I was fortunate to have unmeasurable moments of experiencing my parents simply as parents and not only as of the parents-to-a-special-needs-child. They still had ‘normal’ lives, with regular jobs, hobbies and relationships. They just incidentally happened to have an autistic son too. I can’t imagine how hard it was to be in their shoes. I will always commend them for creating normality on par with the average family. I’m lucky to have a solid and happy relationship with my parents, which has gotten better with age and understanding.
(Thank you for sharing your experience as well.)
This whole interview was about Herman’s autism. However, that is not all there is to him. We would like to know how he enriches your lives. What are the things that you love and enjoy about him?
Living with a person with Autism is challenging to those close to them. As a family member, you often must remind yourself that you are the adult in this situation. You are the one with the ability to control your instincts and adapt. Despite this constantly humbling experience, having a child with a disability does not affect the quality of one’s understanding of parenthood. You love this child as you love your other children. Though different and not comparable to other children’s, his achievements also give you immense joy.
We particularly enjoy his quirky use of language. He has an uncanny ability to use words or expressions (supposedly beyond his comprehension) in the most surprisingly appropriate situations. It has often caused great joy and embarrassment as he has absolutely no filters. He has a sense of humour and sometimes indulges in wordplay. We have a cat called Nancy. During the Election in the USA, Herman was watching CNN with us. They referred to Speaker Nancy Pelosi. Herman said: Nancy? Nancy Pelosi? Does she eat cat food?”
He has an ear for accents and languages and has no inhibition to try new words, which he picks up with surprising accuracy. In doing so, he often breaks down social barriers.
He enjoys bird watching outings with his dad and trips on backroads of the Karoo. We must plan these outings carefully to ensure self-catering accommodation. We must follow our set routines and dampen the acoustics. He speaks LOUDLY and without inhibition.
We love it that he shares our love for music and has an exceptional ability to remember lyrics and recognise songs after a few bars of the introduction. We are part of a family band that sings and performs Sixties hits. He is our number one “groupy” and attends most rehearsals. Unfortunately, he cannot keep a tune, except when he sings the National Anthem.
Herman cannot lie. You always get the truth, even in the form of guilty silence. He has no malice towards anybody and honestly believes that people are good and bound to like him. Herman expresses love unconditionally without inhibition. He is a happy and lovable autistic person.
We know that people with autism, just like everybody else, are unique. Although there are similar traits every individual is different. What benefits one person might not do the same for another person. Despite this, can you from your experience, share some advice with parents struggling with a child with autism?
Giving advice may sound presumptuous, but from our personal experience, we learnt through trial and error, especially regarding behaviour challenges and social interaction:
Ultimatums and if /then conditions do not work, whether used for encouragement or as a threat or punishment. It simply creates extreme anxiety, and you do not get the desired result either way. I am talking about small things we all try with our children. “If you are good and cooperate, we can go for a drive “. He will then test the claim by being demanding and keep asking. “Are we still going for a drive? “repetitively. If he picks up that we are in a hurry and anxious, he will often refuse to cooperate, presumably to experience a sense of control as there is little in his life that he can control.
Autistic people must experience a lot of frustration which they cannot understand themselves and verbalise. It leads to anxiety, often channelled as anger. It is difficult to identify the triggers to this kind of vicious circle. When Herman starts feeling anxious and is working himself up towards a meltdown, it helps if we sit down or lie down and talk to him quietly. Responding with aggression escalates the tension. It, however, does not always work, and if it becomes a full-blown meltdown, one must ride the storm until it subsides.
Physical restraint should be the last option if the person can harm themselves or somebody else. Sometimes, it helps to distract him with a story or something that interests him. We also split forces when he is challenging. It seems that if both of us try to contain a situation, it creates more tension. We have tried several prescribed drugs for these sudden attacks of anxiety, but by the time it takes effect, the storm is over in any case. If we can get him to chew ordinary Rescue tablets, it seems to help him to calm down more quickly.
An aspect of his socialisation we realised is essential is to include him in conversations by making eye contact, referring to him, and pointing out things to him. It is usually apparent when he feels excluded. He has always interacted better with adults than with his peers. Autistic children tend to play parallel to one another and seldom engage in an activity together, although they seem to enjoy the company. He loves attention from friends’ older children who involve him in activities and take the lead. He does not like to be talked down to. Grown-ups often do this with disabled people or the elderly – talking loudly and slowly as if the person is hard of hearing.
Can you offer some guidance to people who does not live with autism on how to approach or assist someone with autism or one who has a child with autism?
- Talk in the same tone of voice and in the same way you would to anybody you meet for the first time. They might not answer you, but they take notice.
- Accept that autistic people very seldom make eye contact and do not like to be touched unexpectedly but that they are very finely tuned to atmosphere. If the atmosphere is relaxed and neutral, they will recover from feelings of insecurity soon. If they know you, ask if you can give a hug before approaching them.
- Do not discuss them or their behaviour with their parents in their presence as if they cannot hear or understand. They do and they are sensitive.
- If they are unresponsive or act in a strange way, carry on with the conversation as if this did not happen. (This is usually the most uncomfortable and embarrassing moments for parents).
- If any intervention is required leave it to the parents who can read the situation and have experience in dealing with it.
Is there anything else that you would like to share with our readers?
Although Autism is not curable and a lifetime condition, it is not a life sentence. Autistic people do not know any other way of being in the world and often are unaware that they are not complying with social norms.
As a parent, one’s biggest concern is what will happen to your child when you are no longer there. Most autistic people cannot function independently in society. Although schools for children with Autism have received more attention and funding in recent years, all those children grow up and are still autistic and dependent as adults. I would like to extend a plea to those in positions to make a difference to focus on support and care facilities and protected/specially structured work environments for adults with Autism.
This interview touched me deeply. As parents, we know how intensely we care for our kids. When we suspect that something is wrong, we worry with equal intensity about them. It is hard to imagine the exasperation of not finding the answers that you are looking for. I have great admiration for this family’s commitment, strength, and positivity. I appreciate that they were willing to share their experience with us all. Let us show compassion and kindness to people. Let us dare to change!
Do you live with a child with Autism? Please share your tips and ideas with us.
April is Autism Awareness Month. Please share this article and educate and inform people about the realities of Autism.