A Real Boy: How Autism Shattered our Lives & Made a Family from the Pieces by Christopher Stevens & Nicola Stevens, eBook 2011 Edition; Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book by Christopher Stevens & Nicola Stevens –
Stevens, C. & Stevens, N. (2011) 7% The question everyone asks is, ‘When did you first know?’ We usually say that we knew something was badly wrong before David was two years old.
8% When David wasn’t howling, he was adorable. The first time we dared face the idea that there might be something wrong with him – something trivial, something easily righted – he was sixteen months old.
The whole street was painfully aware that David had suffered a series of ear infections. The screams that signaled physical pain were even more piercing, even more relentless, than his usual howls of protest at the injustice of existence.
Every ear infection had been chased away with antibiotics, but they always seemed to come back worse than before. It was plausible that David’s hearing was clogged, our GP agreed. He might have a condition called ‘glue ear’, where the eardrum was blocked with mucus.
That could make him indifferent to sounds and slow to talk. That appeared to explain all our baby’s problems. And glue ear was simple to fix: tiny plug-busters, or grommets, would be inserted into the bungs to clear them, the aural equivalent of Draino.
9% His unusually active mind was diverted by unusual entertainments. Bristol Zoo is a second home to hundreds of families with toddlers. The walls are high, the gates are guarded, scooters and bicycles are banned and there are no cars.
And no dogs – it’s the only park in the city where a two-year-old can hop, crawl, stagger, slide and roll across the grass without getting smeared in something unpleasant.
It’s also the only park with lions and crocodiles, of course, but moderate parental vigilance ought to be enough to ensure no one gets eaten. Parental vigilance failed, one day just before Christmas.
10% I called David’s name, once or twice, half-heartedly. I was too scared to care whether strangers thought I was a bad father for losing my child, but I knew there was no point in shouting. He had never come at our call. Never, not once.
David probably hadn’t even noticed my absence. He’d be doing the usual David things. It had to be the Insect House. And it was. He was tucked into a corner, where he wouldn’t be trampled, lying on his back and gazing at the mirror ball.
I tried to hug him, but he ducked away. He wouldn’t leave the Insect House, until a break came in the ambient music. I was holding the hood of his anorak – he wouldn’t take my hand – as I guided him towards the exit and thinking that his glue ear couldn’t be too bad if he could hear that music… he lunged forward and disappeared up a woman’s skirt.
‘Sorry!’ I said. “Sorry, he thinks you’re his mum.’ I had no idea if this was true…
‘Stop it! Stop it!” she said, jerking her leg, shouting at the squirming form. She slid a hand down her waistband to dislodge him, but it was obvious David had taken firm hold of something. I could only hope it was a thigh.
I didn’t know if I should reach inside her skirt. It might seem too forward: I’m not sure about the etiquette in that situation.
David was beaming when he emerged. Since no apology of explanation would be enough, I simply dragged him away, while his victim gaped after us.
“How was the zoo?” Nicky asked later.
‘David had fun,’ I said.
14% Some other ‘less cute’ behaviors were there too – the rug-chewing tantrums, the incessant way he crashed his head against the slats of his cot.
Nicky (on the computer) showed me the page, and it was scathing. Nicky went back to the Net, searching for stronger evidence, and found the Diagnostic and Statistical Manual of Mental Disorders, DSM - IV section on Autism.
David would have to match at least six of them, from a list of twelve. It didn’t look good. David had achieved top marks on the Diagnostic Criteria for Autistic Disorder.
< My Thoughts > “DSM - IV list of twelve…”
If your child has received a ‘new’ DSM-V diagnosis, which supersedes the DSM - IV diagnosis, then you may be required by school districts, developmental programs, or others, to provide a letter stating the current diagnosis. When you are asked to provide this documentation, clarify exactly what they expect to see. Get that request in writing, if you can.
Lord, C., PhD. (2018), Director of the Child Mind Institute and member of the APA’s DSM-V work group explains that with the DSM IV criteria taken ‘literally’, anybody in the world could qualify for Asperger’s or PDD-NOS. That the goal of the revision was “to ensure that autism was not used as a ‘fallback diagnosis’ for children whose primary trait might be intellectual disability or aggression.”
But, Harslad, E., et al. (2014) caution that with the new model, DSM-V, those previously diagnosed according to the DSM-IV may no longer meet the qualification for services. Clinicians have concerns that the new DSM-V will disproportionately exclude those with certain cognitive abilities, those of certain ages, and those with certain levels of functioning.
Because the ‘checklist’ has changed to a “2-Group” model, Mandy, M. (2016) fears that those who most need ‘state’ services won’t get them. He feels that the real issue is ‘threshold’, the ‘level’ of symptoms to which everyone can agree. His concern is that ‘borderline’ people and those assessed at lower ‘levels’ of measure will be left out.
Mandy, et al. state that they is hopeful, however, that the DSM-V will now provide a new and improved picture of ‘females’, previously missed by professionals. That meeting this new diagnosis criteria will result in reducing the ‘gender-based inequities’ the DSM-IV couldn’t.
They continue to say that there is a need to increase better awareness of how females seem to cope with social situations differently than males. They fear that females, while able to ‘forge’ an ‘identity’ which allows them to ‘pretend to be normal’, they are subsequently putting themselves at risk for damaging behavior.
Stevens, C. & Stevens, N. (2011) 14% I made a last attempt to laugh it all off, by underlining fragments of the criteria which could apply to me. ‘I’ve got dodgy social skills,’ I said.
‘I like to be solitary. I’ve got a million rituals. He’s not autistic; he’ll just grow up to be a journalist.’ ‘Stop trying to make a joke of it,’ she told me. ‘We need to talk to a doctor.’
15% The doctor was looking at David with a face of raw pity. ‘I can’t say whether it’s autism,’ he told me. ‘That will take a full assessment. But your son does have a severe mental disability. I’m sorry.’
I swallowed. It was as though we’d been falling into an abyss, turning slowly through the void, for many weeks. And now we’d hit the ground. The doctor told us to go back to the GP and insist on seeing a specialist. David’s needs were urgent.
Because David couldn’t talk, we still thought of him as a baby. He drank hot milk through a baby bottle, and outside the house he never walked but always rode in a buggy. He was three feet tall, but he was a baby.
17% When we got home (from taking son James to the nursery), David would choose a video, always Postman Pat, and I would take a shower…it wasn’t as if he could get out of the house. He was just a baby.
So when I stepped out of the shower one Tuesday and realized I could hear cars and people in the street outside… I peered down the stairs to see the front door was wide open.
Barefoot and dripping, in a ragged toweling robe, I called out as I walked down the stairs: ‘Nicky, is that you? Are you back?’
She didn’t answer. I could hear Postman Pat…I stuck my head into the sitting room.
David wasn’t there. Calling to him was pointless… With my arms folded across my chest and doing that high-stepping trot which only barefoot adults on stony tarmac can achieve, I tried to guess where David would go.
< My Thoughts > “I tried to guess where David would go.”
'Wanderers' and/or 'elopers' often retrace steps that bring them to places that they enjoy. Or, in the case of our Sonny, he knows that any 'door' is an alluring means of escape from a situation where he doesn't want to be.
Stevens, C. & Stevens, N. (2011) …I caught sight of David: he was marching with a purpose to the grocery shop. I grinned. It was a relief to know he was safe, and I admired his cheekiness. ‘Hi! Excuse me, little fellow! You want sweeties? You have to give me money, yes? No money, no sweeties. You give to me.’
And then there was a shriek, so blood-chilling that Vince must have thought he’d accidentally hurt the little shoplifter…
‘He’s with me,’ I shouted, and tried to give Vince a thumbs up as I scooped David off the floor and kept my robe shut at the same time. Vince pressed the sweets into David’s hand a free gift. The screaming didn’t stop, even though David crammed a couple straight down his throat.
Sicile-Kira, C. (2018) reminds us that… “children on the autism spectrum are at a higher risk of being hurt, victimized or wandering off. Children with autism do not appear to have a safety 'antenna' built in, and their sensory processing does not effectively work to help them in the area of safety and crisis prevention.”
Stevens, C. & Stevens, N. (2011) 8% James started primary school that September. Six days later, David’s assessment began…
19% ‘Let’s go home,’ I whispered to Nicky. ‘We don’t have to put him through this.’ ‘You’re not making this any easier, she hissed back.’
He was smart, he was bright, he could work out buckles and locks and gadgets, so he didn’t have ‘learning difficulties’ – he just couldn’t talk. It would hold anybody back. Once that was sorted out, he’d be flying. No one ever quite said: ‘Face facts. Get real. You’re only fooling yourselves.’
20% ‘I’m Mary,’ she said, suddenly holding out her hand to me. ‘From social services.’ I goggled at her. ‘We haven’t asked for a social worker.’ ‘But when you do,’ she said, with…a hopeless little smile, ‘it’ll be me.’
‘Why? David’s very well cared for. Surely the doctors haven’t told you any different?’ ‘It’s routine,’ said Mary. ‘David has special needs, so obviously a social worker has to be available. ‘We don’t want that!’
The social worker shrugged, and simpered. It’s routine,’ she repeated. ‘You might want David to have respite care, or to have him fostered for short periods.’ ‘David lives with his family,’ I said, my voice shaking, ‘and we’re all coping very well.’ ‘That might change,’ she said.
21% We made the doctor say it again. ‘Your son is probably not autistic, or only mildly so. He has a communication disorder, and that has to be addressed. But my opinion is that he’s outside the autistic spectrum.’ This was straightforward headline news, as far as I was concerned. ‘NIGHTMARE OVER … Screaming Boy of Bristol is Not a Fruitloop, Say Medics.’ Nicky was less trusting.
26% David’s melodramatic attitude to transitions made house hunting difficult. We’d decided to move – house prices were finally picking themselves up off the floor, and we wanted to buy a place with a garden while we could afford one.
27% When David arrived at his new home, his mum was waiting on the doorstep with a tube of Rolos and a bottle of hot milk, David knew a good thing when he saw it – he strolled inside like a millionaire tourist returning to a favorite hotel.
30% David’s case was on hold. We’d dragged him through the diagnosis because the doctors agreed the best long-term hopes lay in ‘early intervention’; now the council was dodging its responsibility to help him.
31% At the end of the first term, I was driving David home from Music Space school when the nursery-rhyme tape ended. Before I could flick it over, a clear, high voice sang, “In the bad, bad lands of Australia!’
I called Nicky at the office. I’d just heard our son’s first words. Some little boys say Dada’ … David had launched into a music-hall number about a faulty boomerang.
< My Thoughts > “I’d just heard our son’s first words.”
Our Sonny is non-verbal, but makes many sounds which tell us of his pleasures and displeasures. We found that he can operate a simple augmented device and uses board books with sounds to let us know what he is thinking. He even activates one that says "I love you."
Landau, E. (2018) lets us know that brain regions involved in movement, attention, planning and memory consistently showed activation when participants listened to music -- these are structures that don't have to do with auditory processing itself. This means that when we experience of music, a lot of other things are going on beyond merely processing sound.
< My Thoughts > "...experience of music ..."
Music is amazing…we apparently use a different part of the brain to understand and enjoy music. As a parent, we carry a toy cassette player which plays classical music for Sonny when he is in stress mode, or coming out of a seizure.
As a special education teacher, I have had students with autism react favorably to hearing music while they are learning a task. In fact, there was a new classroom aide with the annoying habit of listening to her MP3 player through earbuds during classtime.
Instead of calling her on it, I motioned for her to put one of her earbuds in the student’s ear when he started screaming in protest at being asked to work a puzzle. The look on the child’s face was priceless.
Truly, it was like flipping a switch. He calmed down and became compliant and cooperative. Often times, discoveries like this don’t last…but, this one did. The parents couldn’t believe how the music changed his behavior, but soon he had his own MP3 player and tunes.
Stevens, C. & Stevens, N. (2011) 59% That summer, David was offered respite sessions at an NHS children’s unit called Church House, a mile from his school. Six months earlier, we would have turned the offer down. We didn’t want to admit we needed respite from our own child. It felt like a confession of failure.
71% He has learned to say a lot that he doesn’t understand. Words have meaning for him in the same ways as music: he invokes them for specific situations.
When he acts out his videos, David takes almost all the parts and recites nearly all the script, but a key role is reserved for Mum.
72% The first time I saw him act out a whole movie was in a playpark, when he was six. In the whole performance, he barely uttered a recognizable word: the script was reduced to shapeless phonetics.
I could sometimes guess what he was trying to say – as he flung himself off monkey bars shrieking, ‘Ah-ooo, a-a eee!’ I knew he was imitating Mowgli’s shout of ‘Baloo, catch me!’ But it was obvious David didn’t understand what the words meant, and didn’t care.
Within a few months, that had changed. He was starting to shape words with the same precision he’d applied to song lyrics for years.
Now he could shout, ‘Baloo, catch me!’ and sound like his life depended on it. But he still had no idea what the words meant. The medical term for this use of language is ‘echolalia’, which means ‘speaking in echoes’… a complex phenomenon which serves many purposes.
< My Thoughts > “…use of language is ‘echolalia’ in autism”
Echolalia is briefly defined as a stereotyped repetition of another person’s words or phrases.
Stokes, S. (2018) encourages us that “The presence of echolalia in children with autism can be a positive indicator for future meaningful language development, at least on a ‘surface’ level. She says that use of ‘echolalia’ can be for both communicative and non-communicative purposes. “Sophisticated utterances are usually repeated without a clear or complete understanding of the meaning of that utterance.”
Stokes continues that, communication can be used for conversational turn taking, initiation of interacting vocally, requesting and affirming responses to another person. Example: When asked, “Want to go swing?” the child answers… “Want to go swing?” When echolalia is used for non-communicative purposes the communication may not appear relevant to the situation or context.
It may be triggered by a setting. Such as walking into the lunchroom the child may say to no one in particular, “Everyone find a seat and start eating.” Then there are the utterances that are used to direct one’s own actions. “Wash my hands. Turn on the water. Get the soap.” and so forth.
< My Thoughts > "...the child may say to no one in particular..."
We had a foster child who was stuck in the echolalia stage of communication. One day he came home from school happily singing the name “Victoria”, “Victoria”, “Victoria”, over and over again in a loop. The next day I asked his teacher if she had a new student. "Yes,” she replied rather surprised, “Her name is Victoria.”
Note: For further information on ‘echolalia’, ‘non-verbal’, and other stereotypical communication by children and adults with autism, in my Free ASD Book: Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online under UNIT 3 What Is Most Concerning? CHAPTER 2 Speech & Language Communication (Including 'Nonverbal' & assisted/alternative communication).
Stevens, C. & Stevens,N. (2011) 87% We walked all the way to the green bus and back. ‘That was a long walk,’ I said. ‘No green bus!’ his face crumbled. ‘No green bus!’ ‘Green bus all gone. Goodbye green bus,’ I said. ‘Goodbye green bus,’ he snorted.
That moment was the biggest development in David’s mind since the day he started naming objects. ‘Goodbye’ gave him a way to think about the past.
It might seem as if I’m attaching too much importance to one word, but the change in David’s thinking was breathtaking. By the time we’d walked home, he’d worked out that we could discuss all the day’s events.
89% The only viewpoint in the whole world was David’s. He couldn’t believe that anyone saw anything, or felt anything, except what he was seeing and feeling.
We’ve spent years trying to understand that. It’s simple, and logical, and quiet alien. He can’t talk. He’s autistic.’
Nicky heard son James answer the phone one Saturday: the pharmacist was calling. ‘Can I speak to David Stevens?’ he asked.
‘No’, said James, ‘he can’t talk. He’s autistic.’
< My Thoughts > ‘No’, said James, ‘he can’t talk. He’s autistic.’
Our son seems to understand much of what he hears in the home and on TV. Being non-verbal doesn’t mean he can’t make sounds, laugh or grunt “Uggh” when he’s annoyed. Or mumble something that sounds like “Uh-huh” for okay, thanks, or?
To this day, when we explain that Sonny is non-verbal, the normal reaction a person has is to begin shouting so Sonny can hear them. “No, no, he’s not deaf’ I say, ‘he hears and understands (mostly)…he just can’t talk.” The person usually responds with, "Oh my!"
Typical early ‘non-verbal’ communication behavior is to drag the nearest person to what the child wants. Then they’ll tantrum until you figure out what they want.
Stokes, S. (2018) explains that in order to develop an appropriate communication intervention program for the non-verbal child with autism, one must determine the child’s current communication abilities.
She offers that one way to start is to ask the key questions – “Does the child seem to desire communication?” “Does the child exhibit intentional communication?” “In what way does the child communicate?”
Stevens, C. & Stevens, N. (2011) 90% The tragedy concealed in those half-dozen words, “He can’t talk. He’s autistic" seemed much more real, Nicky told me, when she heard them spoken by our other child.
98% When people wonder, ‘How do you cope?’ the answer is that David loves life, and this is possible because of the staff at Briarwood, and Church House, and all the others who do far more for him than we would dare ask.
End of excerpts from the book by Christopher Stevens & Nicola Stevens.
REFERENCES:
Bargiela, S., Steward, R., Mandy, W, (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype, Journal of Autism & Developmental Disorders; V46; 2770-2773.
Harstad, E., Fogler, J., Sideridis, G., et al. (2014). Comparing Diagnostic Outcomes of Autism Spectrum Disorder Using DSM-IV-TR & DSM-5 Criteria; Journal of Autism & Developmental Disorders; V45; 1437-1450.
Landau, E. (2018). This Is Your Brain On Music. Retrieved online from:
https://www.cnn.com/2013/04/15/health/brain-music-research/index.html
Lord, C. (2018). Director of the Child Mind Institute; 101 E. 56th St., New York, NY, 10022. Retrieved online from: https://childmind.org/bio/catherine-lord-phd/
Mandy, W., Slappendel, G., et al. (2016). Utility of the 3Di short version for the diagnostic assessment of autism spectrum disorder and compatibility with DSM-5; Journal of Autism & Developmental Disorders; V46; p1834-1836.
Sicile-Kira, C. (2014) Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, NY: Penguin Random House Company.
Sicile-Kira, C. (2018) The Autism Advocate. Retrieved online from: https://www.psychologytoday.com/us/blog/the-autism-advocate
Stokes, S., Autism Consultant (2018). Increasing Expressive Skills for Verbal Children with Autism. Funded under a contract with CESA7 & funded by a discretionary grant from the Wisconsin Department of Public Instruction.
Excerpts from the book by Christopher Stevens & Nicola Stevens –
Stevens, C. & Stevens, N. (2011) 7% The question everyone asks is, ‘When did you first know?’ We usually say that we knew something was badly wrong before David was two years old.
8% When David wasn’t howling, he was adorable. The first time we dared face the idea that there might be something wrong with him – something trivial, something easily righted – he was sixteen months old.
The whole street was painfully aware that David had suffered a series of ear infections. The screams that signaled physical pain were even more piercing, even more relentless, than his usual howls of protest at the injustice of existence.
Every ear infection had been chased away with antibiotics, but they always seemed to come back worse than before. It was plausible that David’s hearing was clogged, our GP agreed. He might have a condition called ‘glue ear’, where the eardrum was blocked with mucus.
That could make him indifferent to sounds and slow to talk. That appeared to explain all our baby’s problems. And glue ear was simple to fix: tiny plug-busters, or grommets, would be inserted into the bungs to clear them, the aural equivalent of Draino.
9% His unusually active mind was diverted by unusual entertainments. Bristol Zoo is a second home to hundreds of families with toddlers. The walls are high, the gates are guarded, scooters and bicycles are banned and there are no cars.
And no dogs – it’s the only park in the city where a two-year-old can hop, crawl, stagger, slide and roll across the grass without getting smeared in something unpleasant.
It’s also the only park with lions and crocodiles, of course, but moderate parental vigilance ought to be enough to ensure no one gets eaten. Parental vigilance failed, one day just before Christmas.
10% I called David’s name, once or twice, half-heartedly. I was too scared to care whether strangers thought I was a bad father for losing my child, but I knew there was no point in shouting. He had never come at our call. Never, not once.
David probably hadn’t even noticed my absence. He’d be doing the usual David things. It had to be the Insect House. And it was. He was tucked into a corner, where he wouldn’t be trampled, lying on his back and gazing at the mirror ball.
I tried to hug him, but he ducked away. He wouldn’t leave the Insect House, until a break came in the ambient music. I was holding the hood of his anorak – he wouldn’t take my hand – as I guided him towards the exit and thinking that his glue ear couldn’t be too bad if he could hear that music… he lunged forward and disappeared up a woman’s skirt.
‘Sorry!’ I said. “Sorry, he thinks you’re his mum.’ I had no idea if this was true…
‘Stop it! Stop it!” she said, jerking her leg, shouting at the squirming form. She slid a hand down her waistband to dislodge him, but it was obvious David had taken firm hold of something. I could only hope it was a thigh.
I didn’t know if I should reach inside her skirt. It might seem too forward: I’m not sure about the etiquette in that situation.
David was beaming when he emerged. Since no apology of explanation would be enough, I simply dragged him away, while his victim gaped after us.
“How was the zoo?” Nicky asked later.
‘David had fun,’ I said.
14% Some other ‘less cute’ behaviors were there too – the rug-chewing tantrums, the incessant way he crashed his head against the slats of his cot.
Nicky (on the computer) showed me the page, and it was scathing. Nicky went back to the Net, searching for stronger evidence, and found the Diagnostic and Statistical Manual of Mental Disorders, DSM - IV section on Autism.
David would have to match at least six of them, from a list of twelve. It didn’t look good. David had achieved top marks on the Diagnostic Criteria for Autistic Disorder.
< My Thoughts > “DSM - IV list of twelve…”
If your child has received a ‘new’ DSM-V diagnosis, which supersedes the DSM - IV diagnosis, then you may be required by school districts, developmental programs, or others, to provide a letter stating the current diagnosis. When you are asked to provide this documentation, clarify exactly what they expect to see. Get that request in writing, if you can.
Lord, C., PhD. (2018), Director of the Child Mind Institute and member of the APA’s DSM-V work group explains that with the DSM IV criteria taken ‘literally’, anybody in the world could qualify for Asperger’s or PDD-NOS. That the goal of the revision was “to ensure that autism was not used as a ‘fallback diagnosis’ for children whose primary trait might be intellectual disability or aggression.”
But, Harslad, E., et al. (2014) caution that with the new model, DSM-V, those previously diagnosed according to the DSM-IV may no longer meet the qualification for services. Clinicians have concerns that the new DSM-V will disproportionately exclude those with certain cognitive abilities, those of certain ages, and those with certain levels of functioning.
Because the ‘checklist’ has changed to a “2-Group” model, Mandy, M. (2016) fears that those who most need ‘state’ services won’t get them. He feels that the real issue is ‘threshold’, the ‘level’ of symptoms to which everyone can agree. His concern is that ‘borderline’ people and those assessed at lower ‘levels’ of measure will be left out.
Mandy, et al. state that they is hopeful, however, that the DSM-V will now provide a new and improved picture of ‘females’, previously missed by professionals. That meeting this new diagnosis criteria will result in reducing the ‘gender-based inequities’ the DSM-IV couldn’t.
They continue to say that there is a need to increase better awareness of how females seem to cope with social situations differently than males. They fear that females, while able to ‘forge’ an ‘identity’ which allows them to ‘pretend to be normal’, they are subsequently putting themselves at risk for damaging behavior.
Stevens, C. & Stevens, N. (2011) 14% I made a last attempt to laugh it all off, by underlining fragments of the criteria which could apply to me. ‘I’ve got dodgy social skills,’ I said.
‘I like to be solitary. I’ve got a million rituals. He’s not autistic; he’ll just grow up to be a journalist.’ ‘Stop trying to make a joke of it,’ she told me. ‘We need to talk to a doctor.’
15% The doctor was looking at David with a face of raw pity. ‘I can’t say whether it’s autism,’ he told me. ‘That will take a full assessment. But your son does have a severe mental disability. I’m sorry.’
I swallowed. It was as though we’d been falling into an abyss, turning slowly through the void, for many weeks. And now we’d hit the ground. The doctor told us to go back to the GP and insist on seeing a specialist. David’s needs were urgent.
Because David couldn’t talk, we still thought of him as a baby. He drank hot milk through a baby bottle, and outside the house he never walked but always rode in a buggy. He was three feet tall, but he was a baby.
17% When we got home (from taking son James to the nursery), David would choose a video, always Postman Pat, and I would take a shower…it wasn’t as if he could get out of the house. He was just a baby.
So when I stepped out of the shower one Tuesday and realized I could hear cars and people in the street outside… I peered down the stairs to see the front door was wide open.
Barefoot and dripping, in a ragged toweling robe, I called out as I walked down the stairs: ‘Nicky, is that you? Are you back?’
She didn’t answer. I could hear Postman Pat…I stuck my head into the sitting room.
David wasn’t there. Calling to him was pointless… With my arms folded across my chest and doing that high-stepping trot which only barefoot adults on stony tarmac can achieve, I tried to guess where David would go.
< My Thoughts > “I tried to guess where David would go.”
'Wanderers' and/or 'elopers' often retrace steps that bring them to places that they enjoy. Or, in the case of our Sonny, he knows that any 'door' is an alluring means of escape from a situation where he doesn't want to be.
Stevens, C. & Stevens, N. (2011) …I caught sight of David: he was marching with a purpose to the grocery shop. I grinned. It was a relief to know he was safe, and I admired his cheekiness. ‘Hi! Excuse me, little fellow! You want sweeties? You have to give me money, yes? No money, no sweeties. You give to me.’
And then there was a shriek, so blood-chilling that Vince must have thought he’d accidentally hurt the little shoplifter…
‘He’s with me,’ I shouted, and tried to give Vince a thumbs up as I scooped David off the floor and kept my robe shut at the same time. Vince pressed the sweets into David’s hand a free gift. The screaming didn’t stop, even though David crammed a couple straight down his throat.
Sicile-Kira, C. (2018) reminds us that… “children on the autism spectrum are at a higher risk of being hurt, victimized or wandering off. Children with autism do not appear to have a safety 'antenna' built in, and their sensory processing does not effectively work to help them in the area of safety and crisis prevention.”
Stevens, C. & Stevens, N. (2011) 8% James started primary school that September. Six days later, David’s assessment began…
19% ‘Let’s go home,’ I whispered to Nicky. ‘We don’t have to put him through this.’ ‘You’re not making this any easier, she hissed back.’
He was smart, he was bright, he could work out buckles and locks and gadgets, so he didn’t have ‘learning difficulties’ – he just couldn’t talk. It would hold anybody back. Once that was sorted out, he’d be flying. No one ever quite said: ‘Face facts. Get real. You’re only fooling yourselves.’
20% ‘I’m Mary,’ she said, suddenly holding out her hand to me. ‘From social services.’ I goggled at her. ‘We haven’t asked for a social worker.’ ‘But when you do,’ she said, with…a hopeless little smile, ‘it’ll be me.’
‘Why? David’s very well cared for. Surely the doctors haven’t told you any different?’ ‘It’s routine,’ said Mary. ‘David has special needs, so obviously a social worker has to be available. ‘We don’t want that!’
The social worker shrugged, and simpered. It’s routine,’ she repeated. ‘You might want David to have respite care, or to have him fostered for short periods.’ ‘David lives with his family,’ I said, my voice shaking, ‘and we’re all coping very well.’ ‘That might change,’ she said.
21% We made the doctor say it again. ‘Your son is probably not autistic, or only mildly so. He has a communication disorder, and that has to be addressed. But my opinion is that he’s outside the autistic spectrum.’ This was straightforward headline news, as far as I was concerned. ‘NIGHTMARE OVER … Screaming Boy of Bristol is Not a Fruitloop, Say Medics.’ Nicky was less trusting.
26% David’s melodramatic attitude to transitions made house hunting difficult. We’d decided to move – house prices were finally picking themselves up off the floor, and we wanted to buy a place with a garden while we could afford one.
27% When David arrived at his new home, his mum was waiting on the doorstep with a tube of Rolos and a bottle of hot milk, David knew a good thing when he saw it – he strolled inside like a millionaire tourist returning to a favorite hotel.
30% David’s case was on hold. We’d dragged him through the diagnosis because the doctors agreed the best long-term hopes lay in ‘early intervention’; now the council was dodging its responsibility to help him.
31% At the end of the first term, I was driving David home from Music Space school when the nursery-rhyme tape ended. Before I could flick it over, a clear, high voice sang, “In the bad, bad lands of Australia!’
I called Nicky at the office. I’d just heard our son’s first words. Some little boys say Dada’ … David had launched into a music-hall number about a faulty boomerang.
< My Thoughts > “I’d just heard our son’s first words.”
Our Sonny is non-verbal, but makes many sounds which tell us of his pleasures and displeasures. We found that he can operate a simple augmented device and uses board books with sounds to let us know what he is thinking. He even activates one that says "I love you."
Landau, E. (2018) lets us know that brain regions involved in movement, attention, planning and memory consistently showed activation when participants listened to music -- these are structures that don't have to do with auditory processing itself. This means that when we experience of music, a lot of other things are going on beyond merely processing sound.
< My Thoughts > "...experience of music ..."
Music is amazing…we apparently use a different part of the brain to understand and enjoy music. As a parent, we carry a toy cassette player which plays classical music for Sonny when he is in stress mode, or coming out of a seizure.
As a special education teacher, I have had students with autism react favorably to hearing music while they are learning a task. In fact, there was a new classroom aide with the annoying habit of listening to her MP3 player through earbuds during classtime.
Instead of calling her on it, I motioned for her to put one of her earbuds in the student’s ear when he started screaming in protest at being asked to work a puzzle. The look on the child’s face was priceless.
Truly, it was like flipping a switch. He calmed down and became compliant and cooperative. Often times, discoveries like this don’t last…but, this one did. The parents couldn’t believe how the music changed his behavior, but soon he had his own MP3 player and tunes.
Stevens, C. & Stevens, N. (2011) 59% That summer, David was offered respite sessions at an NHS children’s unit called Church House, a mile from his school. Six months earlier, we would have turned the offer down. We didn’t want to admit we needed respite from our own child. It felt like a confession of failure.
71% He has learned to say a lot that he doesn’t understand. Words have meaning for him in the same ways as music: he invokes them for specific situations.
When he acts out his videos, David takes almost all the parts and recites nearly all the script, but a key role is reserved for Mum.
72% The first time I saw him act out a whole movie was in a playpark, when he was six. In the whole performance, he barely uttered a recognizable word: the script was reduced to shapeless phonetics.
I could sometimes guess what he was trying to say – as he flung himself off monkey bars shrieking, ‘Ah-ooo, a-a eee!’ I knew he was imitating Mowgli’s shout of ‘Baloo, catch me!’ But it was obvious David didn’t understand what the words meant, and didn’t care.
Within a few months, that had changed. He was starting to shape words with the same precision he’d applied to song lyrics for years.
Now he could shout, ‘Baloo, catch me!’ and sound like his life depended on it. But he still had no idea what the words meant. The medical term for this use of language is ‘echolalia’, which means ‘speaking in echoes’… a complex phenomenon which serves many purposes.
< My Thoughts > “…use of language is ‘echolalia’ in autism”
Echolalia is briefly defined as a stereotyped repetition of another person’s words or phrases.
Stokes, S. (2018) encourages us that “The presence of echolalia in children with autism can be a positive indicator for future meaningful language development, at least on a ‘surface’ level. She says that use of ‘echolalia’ can be for both communicative and non-communicative purposes. “Sophisticated utterances are usually repeated without a clear or complete understanding of the meaning of that utterance.”
Stokes continues that, communication can be used for conversational turn taking, initiation of interacting vocally, requesting and affirming responses to another person. Example: When asked, “Want to go swing?” the child answers… “Want to go swing?” When echolalia is used for non-communicative purposes the communication may not appear relevant to the situation or context.
It may be triggered by a setting. Such as walking into the lunchroom the child may say to no one in particular, “Everyone find a seat and start eating.” Then there are the utterances that are used to direct one’s own actions. “Wash my hands. Turn on the water. Get the soap.” and so forth.
< My Thoughts > "...the child may say to no one in particular..."
We had a foster child who was stuck in the echolalia stage of communication. One day he came home from school happily singing the name “Victoria”, “Victoria”, “Victoria”, over and over again in a loop. The next day I asked his teacher if she had a new student. "Yes,” she replied rather surprised, “Her name is Victoria.”
Note: For further information on ‘echolalia’, ‘non-verbal’, and other stereotypical communication by children and adults with autism, in my Free ASD Book: Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online under UNIT 3 What Is Most Concerning? CHAPTER 2 Speech & Language Communication (Including 'Nonverbal' & assisted/alternative communication).
Stevens, C. & Stevens,N. (2011) 87% We walked all the way to the green bus and back. ‘That was a long walk,’ I said. ‘No green bus!’ his face crumbled. ‘No green bus!’ ‘Green bus all gone. Goodbye green bus,’ I said. ‘Goodbye green bus,’ he snorted.
That moment was the biggest development in David’s mind since the day he started naming objects. ‘Goodbye’ gave him a way to think about the past.
It might seem as if I’m attaching too much importance to one word, but the change in David’s thinking was breathtaking. By the time we’d walked home, he’d worked out that we could discuss all the day’s events.
89% The only viewpoint in the whole world was David’s. He couldn’t believe that anyone saw anything, or felt anything, except what he was seeing and feeling.
We’ve spent years trying to understand that. It’s simple, and logical, and quiet alien. He can’t talk. He’s autistic.’
Nicky heard son James answer the phone one Saturday: the pharmacist was calling. ‘Can I speak to David Stevens?’ he asked.
‘No’, said James, ‘he can’t talk. He’s autistic.’
< My Thoughts > ‘No’, said James, ‘he can’t talk. He’s autistic.’
Our son seems to understand much of what he hears in the home and on TV. Being non-verbal doesn’t mean he can’t make sounds, laugh or grunt “Uggh” when he’s annoyed. Or mumble something that sounds like “Uh-huh” for okay, thanks, or?
To this day, when we explain that Sonny is non-verbal, the normal reaction a person has is to begin shouting so Sonny can hear them. “No, no, he’s not deaf’ I say, ‘he hears and understands (mostly)…he just can’t talk.” The person usually responds with, "Oh my!"
Typical early ‘non-verbal’ communication behavior is to drag the nearest person to what the child wants. Then they’ll tantrum until you figure out what they want.
Stokes, S. (2018) explains that in order to develop an appropriate communication intervention program for the non-verbal child with autism, one must determine the child’s current communication abilities.
She offers that one way to start is to ask the key questions – “Does the child seem to desire communication?” “Does the child exhibit intentional communication?” “In what way does the child communicate?”
Stevens, C. & Stevens, N. (2011) 90% The tragedy concealed in those half-dozen words, “He can’t talk. He’s autistic" seemed much more real, Nicky told me, when she heard them spoken by our other child.
98% When people wonder, ‘How do you cope?’ the answer is that David loves life, and this is possible because of the staff at Briarwood, and Church House, and all the others who do far more for him than we would dare ask.
End of excerpts from the book by Christopher Stevens & Nicola Stevens.
REFERENCES:
Bargiela, S., Steward, R., Mandy, W, (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype, Journal of Autism & Developmental Disorders; V46; 2770-2773.
Harstad, E., Fogler, J., Sideridis, G., et al. (2014). Comparing Diagnostic Outcomes of Autism Spectrum Disorder Using DSM-IV-TR & DSM-5 Criteria; Journal of Autism & Developmental Disorders; V45; 1437-1450.
Landau, E. (2018). This Is Your Brain On Music. Retrieved online from:
https://www.cnn.com/2013/04/15/health/brain-music-research/index.html
Lord, C. (2018). Director of the Child Mind Institute; 101 E. 56th St., New York, NY, 10022. Retrieved online from: https://childmind.org/bio/catherine-lord-phd/
Mandy, W., Slappendel, G., et al. (2016). Utility of the 3Di short version for the diagnostic assessment of autism spectrum disorder and compatibility with DSM-5; Journal of Autism & Developmental Disorders; V46; p1834-1836.
Sicile-Kira, C. (2014) Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, NY: Penguin Random House Company.
Sicile-Kira, C. (2018) The Autism Advocate. Retrieved online from: https://www.psychologytoday.com/us/blog/the-autism-advocate
Stokes, S., Autism Consultant (2018). Increasing Expressive Skills for Verbal Children with Autism. Funded under a contract with CESA7 & funded by a discretionary grant from the Wisconsin Department of Public Instruction.
