Tag: SAI connections

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Autism

He talks of aircrafts, but doesn’t understand relationships

A child on the Autism spectrum may display enhanced static intelligence and lack of dynamic intelligence, a result of neural underconnectivity.
Kamini Lakhaniby Kamini Lakhani | saiconnections01@gmail.com

Part 3 of the Autism Diaries – A differently wired brain

How is it that two children on the Autism Spectrum can exhibit very different behaviours? Or are we unable to see that the behaviours are essentially similar, but the expression different?

Let me give you two examples from my practice.

One of my students, aged 14, knows everything about every commercial aircraft. He knows which airline is discontinuing which model. One day, his discussion with me was about why a particular airline should change a certain passenger aircraft to a cargo aircraft and not scrap it! This same boy is having a rough time at school because he does not understand what kind of impact he has on his peers around him. He does not ‘read’ them well enough and hence it is very difficult for him to maintain friendships.

Another of my students, aged 4, is hyperlexic. He reads words without having been taught. He may not understand their meaning, but he’s totally mesmerised with words and gets lost in the world of words.

It is very difficult for his mother to draw him into a back and forth interaction with the family.

What is the problem in both cases? It is increased static intelligence but lack of dynamic intelligence.

A differently wired brain

Last year I presented at a seminar called, ‘Autism Update’. This seminar was geared towards educating pediatricians and other professionals about Autism or Autism Spectrum Disorders. My fellow presenters included developmental pediatricians and neurologists, occupational therapists, speech language pathologists, psychiatrists, psychologists, special educators and other service providers in the field of autism.

The topic of my presentation was, ‘The Role of ABA (Applied Behaviour Analysis) and RDI (Relationship Development Intervention) in Autism’. In the context of presenting about RDI, I showed a slide related to neural connectivity in the brain of a person with ASD. I was pleasantly surprised to note that similar slides were shown by the neurologists presenting at the conference.

This meant that finally, treatment was keeping up with research! The treatment in context is RDI or Relationship Development Intervention. It is based on the premise that there is a problem with connectivity in the brain of a person with ASD.

Take a look at the slide:

fMRI

This picture is a cross section of the brain of a person on the Autism Spectrum and a neuro typical person (control) in a fMRI (Functional MRI). Both persons were given a task such as sentence comprehension. During this task, areas of the brain that were connected (lit up) were scanned. What this shows is that more areas in the brain of a neuro typical person were lit up (connected) as compared to a person with ASD.

What does this mean?

There is a problem with neural connectivity in the brain of a person with ASD. The brain is differently wired. This does not mean good or bad, right or wrong, normal or abnormal (is that word still being used?). It just means different!

 How does this affect a person who has ASD?

This results in increased static intelligence and lack of dynamic intelligence. It may result in slower processing abilities. It may manifest as an inability to rapidly process multiple information simultaneously.

What is static intelligence?

Static intelligence

 

 

 

 

 

©Steven Gutstein, PhD, RDIconnect, Inc. 2013.

Some static abilities include math computation, reading for surface meaning, operating a computer, working for a desired reward, memorising facts, following directions and many others. Most programmes working with ASD focus on these.

What is dynamic intelligence?

Dynamic intelligence includes going with the flow, seeing the bigger picture, processing rapidly changing information, abstract reasoning, being able to handle changes in plans, good executive functioning (planning, organising and following through).

Dynamic intelligence

 

 

 

 

 

Now consider ‘relative thinking’.

Relative conceptsThink about this – how do you explain the slide on the left to a person on the spectrum, that a cold winter day in Singapore is warmer than a warm winter day in Canada? I went crazy trying to teach these kinds of relative concepts to students who were on my academic curriculum. And why is it so difficult to teach these kinds of concepts to students on the Autism Spectrum? How do you and I get these concepts immediately? It’s all about neural connectivity. It’s all about the brain being differently wired.

RDI is a programme that is developed by Dr Steven Gutstein and his wife, Dr Rachelle Sheely. It is based on rebuilding guided participation to develop dynamic intelligence. It is built on the premise that –

– Neural integration can change throughout life.

– We can provide a second chance to those who have left the pathway of neural development.

I believe that RDI is the training and treatment that is in sync with the latest research based on neural connectivity in the brain. We want to make sure that we work respectfully with those affected by ASD.

Can we work with their areas of strengths and help them increase dynamic intelligence? Feel free to share your thoughts with me on saiconnections01@gmail.com. I will be happy to answer any questions that you may have.

Kamini Lakhani is the founder of SAI Connections. She is a Behaviour Analyst, an RDI (Relationship Development Intervention) Consultant, Supervisor and Trainer responsible for RDI professional training in India and the Middle East. She is the mother of an adult on the Autism Spectrum. She is also a member of Forum for Autism.

Next: Children with ASD know something you don’t.

(Pictures courtesy Steven Gutstein, RDIconnect, www.myspecialneedsnetwork.com)

Categories
Autism

A 14-year-old with lower gross or fine motor skills

Children on the Autism spectrum often display core deficits in motor skills, while others may face problems of another nature.
Kamini Lakhaniby Kamini Lakhani | saiconnections01@gmail.com

Part 2 of the Autism Diaries – Discussing the Autism Core Deficits

Neeraj is a 14-year-old on the Autism Spectrum. He is non verbal and communicates using the PECS (Picture Exhange Communication System).  He has problems with both gross and fine motor skills. He displays attention and hyperactivity issues. His parents and teachers need to work hard on keeping him engaged. Reading and writing is a problem for him. The focus right now is on self help skills, on giving him the quality of life that will help him be independent. He needs to be challenged mentally through situations where he needs to solve problems.

Contrast Neeraj with Dheeraj, who is also a 14-year-old on the Autism Spectrum. He studies in a regular school and is doing fairly well. He scored 70 per cent in the last exam. He also may have some attention problems. He finds only Math and Science difficult and hence needs some remedial intervention for this. Otherwise, he is independent and engages in reasonably good conversations. At present, we are working on emotional sharing and understanding the true meaning of friendship.

Both boys were diagnosed with Autism Spectrum Disorder. How do they share the same diagnosis and yet appear so different? Autism spectrum core deficits

The definition of Autism and Autism Spectrum Disorder (ASD) is provided by the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). Children with autism are less able to interact with the world as other children do. Typically they have deficits in three key areas:

  1. Verbal and non-verbal communication
  2. Social awareness and interactions
  3. Imaginative play (variable interests and behaviours).

To provide a comprehensive definition of Autism Spectrum Disorder, there are separate labels for different points on the spectrum. At the least affected end, you find labels like ‘Asperger’s Syndrome’, ‘High Functioning Autism’ and ‘Pervasive Developmental Disorder – Not Otherwise Specified’ (PDD-NOS). At the other end of the spectrum you may find labels such as ‘Autism’, ‘Classic Autism’ and ‘Kanner’s Autism’.

Keeping the above definition in mind, Neeraj may fall under the category of ‘Classic Autism’ and Dheeraj may fall under ‘Asperger’s Syndrome’ or ‘High Functioning Autism’.

The Core Deficits of Autism

Dr Steven Gutstein, renowned psychologist and founder of RDI (Relationship Development Intervention), has outlined certain core deficits of autism. These core deficits are mostly shared by everyone on the Autism Spectrum, irrespective of their language abilities, IQ or academic success.

  1. Declarative or experience sharing communication: If they are non verbal, they may point to get what they want. If they are verbal they may ask for what they want, make demands, talk about their particular interests. But verbally or non-verbally, they may find it difficult to share their experiences and feelings with you.
  2. Referencing: They may learn to recognise and label various facial expressions, or be taught ‘eye contact’, but they can’t borrow your perspective to help them resolve situations of uncertainty.
  3. Regulating: They may learn to follow procedures and scripts, but engage with you, in back and forth interactions, if you are being spontaneous or unpredictable.
  4. Episodic Memory (Autobiographical Memory): They may have a good rote or procedural memory, but lack the kind of personal memory which allows them to reflect on past experiences or anticipate future ones.
  5. Flexible thinking: They may understand rule-based thinking, or use black and white thinking, but can’t rapidly adapt or alter plans based on changing circumstances, think of multiple right answers, know when something is ‘good enough’ or see ‘shades of grey’.

AutismRecognising Asperger’s Syndrome

Here is another scenario that you may find interesting.

I recently met with the parents of a student, who has just completed his 10th grade. The boy scored well in his exams. Placement in college is difficult. He displays behavioural issues which may not be acceptable in college. He ‘managed’ to get away at school – but his parents are concerned about what he will do in college. They’ve taken him to different vocational centers around the city, but he displays even more severe behaviour such as self-hitting in such places. He feels that the other students here are ‘abnormal’. He is unwilling to accept his diagnosis of ASD. He has Asperger’s Syndrome.

I went through the core deficits listed above with the parents. They confirmed that their son displayed all the core deficits. So, the point is, Core Deficits of ASD will be present, irrespective of the level of functioning.

For an accurate diagnosis, it is important to use the Core Deficits criteria, as opposed to just looking at language and speech and imaginative play.

There are other problems that ‘attach’ to Autism Spectrum disorders. These are co-occurring conditions. These could be:

  1. Speech or language difficulties? No speech? Delayed speech? Echolalia?
  2. Do they have sensory issues: over sensitivity to sounds, lights and textures?
  3. Motor difficulties: fine motor? Gross motor? Motor planning?
  4. Emotional regulation difficulties: anxiety, depression, aggression?
  5. Physical or diet related difficulties: allergies, limited diet?
  6. Repetitive behaviors: ‘stimming’, hand flapping?

Most programmes focus on improving the co-occurring conditions. By doing this, things may get better. However, unless the Core Deficits are treated, Autism may not be truly remediated.

Here is a query that I received recently.

Hi,

My child was diagnosed to have autistic features at 17.5 months. His m chat was 11 abnormal out of 20. We started special education at this time itself. Now he has improved a lot. He is 23 months now and current m chat is 2 out of 20 and cars is 22.5. Although he is out of ASD but not speaking properly yet. He understands and follows almost 80% commands. He is trying to speak many words but not able to. So I have started speech therapy. Kindly tell me his prognosis. Will he come in line same as normal kids? What percentage chances are there for him to come back to normal, pls tell? (sic)

This is likely to happen when Core Deficits are not worked on. Once the core deficits are worked on, we are likely to see balanced development.

I’m currently following the RDI technique which not only addresses core deficits of autism but also focusses on parent training which helps them manage the uncertainty that comes along with a having an autistic child. Please email any questions you have at saiconnections01gmail.com and I will reply to you.

Do share your thoughts and opinions in the comments below. I would love to hear from you.

Kamini Lakhani is the founder of SAI Connections. She is a Behaviour Analyst, an RDI (Relationship Development Intervention) Consultant, Supervisor and Trainer responsible for RDI professional training in India and the Middle East. She is the mother of an adult on the Autism Spectrum. She is also a member of Forum for Autism.

Next: The disconnect between static and dynamic intelligence.

(Pictures courtesy www.dw.de (photographer M Krishna), worldstemcells.com, www.thecuttingedgenews.com. Images are used for representational purpose only

Categories
Autism

‘He wouldn’t respond to me, his own mother’

Autism is difficult to understand and come to terms with, for parents. But they must realise they’re not to blame.
Kamini Lakhaniby Kamini Lakhani

Part I of the Autism Diaries – When a child not responding to his mother is not being stubborn

“He was uncommunicative. He didn’t speak till he was three years old, and even then, he didn’t pick the language as quickly as other children do,” the woman remembered. “He loved playing with building blocks, he would colour in his colouring books for ages. But he hardly ever responded when I asked him a question. Imagine that. My son did not respond to me, his mother.”

In the course of my work as a Behaviour Analyst and an RDI Consultant, I often encounter this sort of plaintive recounting of life with an autistic child. And more often than not, parents tend to blame themselves for their child’s autism. Most are unable to reconcile themselves to the reality of the disorder, and hence, are slower in accepting the situation and getting help.

For others, recognising that their child has autism is the first step they are ill-equipped to take.

Understanding Autism Spectrum Disorders

The present rates of Autism or Autism Spectrum Disorders (ASD) are shocking – 1 in 68 people are being diagnosed with ASD. So what exactly is Autism? Most people have an idea of what it is, but are not entirely clear.

Here’s a definition of Autism which also differentiates Autism from Autism Spectrum disorders, such as Asperger’s syndrome and Pervasive Developmental Disorder. (Source: Autism Research Institute, California)

“Autism is a severe developmental disorder that begins within the first three years after conception. Most autistic children look like other kids, but do puzzling and disturbing things which are markedly different behaviours from those of typical children. In less severe cases on the spectrum (Pervasive Developmental Disorder (PDD) or Asperger’s Syndrome), children usually have speech and might even be intellectually gifted, but they have one or more ‘autistic’ social and behavioral problems. People used to think that autism was irreversible. The good news is that there are now a range of treatments that can be really helpful.”

Donna Williams, renowned writer having autism, often describes autism as a bowl of fruit salad. She implies that there are a lot of possible ingredients, but each person living with autism has a different mixture.

I find this to be true. I may have worked with hundreds of children and adolescents affected by autism – no two are exactly alike. They do share some common features in terms of the core deficits. But otherwise, they differ. If you have met one person with autism, you have met one person with autism. Let us not generalise.

About 20 years ago, there were few children being diagnosed with Autism. The prevalent rates were 5 in 10,000. Today the rates have skyrocketed to 1 in 68. True, diagnostic facilities are better today, but that cannot account for such a steep increase.

It is a known fact that autism has a genetic base. However, researchers are now talking about environmental factors that could be responsible for the high rates. These include heavy metals, pesticides, vaccinations etc. Nothing so far, has been scientifically validated.

Since there is no ‘medical test’ available to ascertain if the child has autism, we rely heavily on observation. Three basic areas that we normally look at:

Social Interaction

The child on the spectrum may not play appropriately with toys. For example, instead of playing appropriately with toy cars, they may line up the cars or just spin the wheels around. There may be a lack of reciprocity in back and forth interaction. They may not engage in pretend play.

Communication

One may notice fewer words being spoken, lack of speech or in some cases, no speech at all. The child may not respond to his name by one year of age – this could be a red flag. The child may also seem to be in his own world, not paying attention to what somebody is saying.

Repetitive behaviours

One may also notice the child engaging in stereotyped kind of behaviours, hand flapping or an ‘emotional’ attachment to certain inanimate objects. For those with PDD or Aspergers, one may notice limited interests or inability to determine if others are even interested in what they are talking about. For example the child may have a huge amount of knowledge about airplanes and will insist on talking about this, whether he has an interested audience or not.

Here are some signs of autism to look out for:

Autism signs

Autism symptoms

 

If you suspect your child has autism…

Check with your pediatrician if he/she can run the M- Chat (Modified Checklist for Autism in Toddlers). This is a simple, preliminary questionnaire which points towards ASD. If the pediatrician is not aware of this there are development centers that you could visit.

Visit a child development center such as

– Ummeed Child Development Center, 1-B,1/62, Mantri Pride Building, Subash Nagar, N.M.Joshi Marg, Near Arthur Road Junction, Lower Parel (E), Mumbai, 400011

– Drishti Child, 205-206, Midas Chamber, off New Link Road,Andheri (W), Mumbai-400053

– SAI Connections, 201 ,2nd Floor, Bhagya Ratan Niwas, Above Prabhu Jewellers, 3rd road, Khar (W), Mumbai- 400 054.

Development Centers will normally run a battery of tests and a multi speciality team will carefully observe your child. Contact Forum for Autism (a registered parent body) for support and to connect with more experienced parents.

You are not to blame

The diagnosis of Autism is very difficult to accept. You are not responsible for what has happened. It is NOT your fault. You did not do anything wrong. Instead, below is what you can do, for yourself and your family.

  1. Take care of yourself – physically and mentally. I definitely suggest counselling for parents with newly-diagnosed children.
  2. Go through the grieving process and accept the diagnosis.
  3. Please do not be afraid of the stigma. We need to educate ourselves, our families and the communities that we live in.
  4. Early intervention is proven to be effective. What I find commonly happening in India, is that parents take too much time ‘shopping around’. Study options available – do your research and start working with your child, as soon as possible.
  5. And finally, things will get better.

Do you have questions? Do you suspect that your child has autism? Feel free to send me an email at saiconnections01@gmail.com. I will be happy to help.

Kamini Lakhani is the founder of SAI Connections. She is a Behaviour Analyst, an RDI (Relationship Development Intervention) Consultant, Supervisor and Trainer responsible for RDI professional training in India and the Middle East. She is the mother of an adult on the Autism Spectrum. She is also a member of Forum for Autism.

Next: A comprehensive view of autism, its symptoms and core deficits.

(Pictures courtesy www.thehindu.com, SAI Connections. Featured image is used for representational purpose only)

Categories
Deal with it

Training parents of children with autism

Most therapies centre around treating autistic children. This centre, the only one in Mumbai, trains parents to deal with autism.
by The Editors | editor@themetrognome.in

It’s a cosy space located very close to Khar railway station, and at first glance, the hustle and bustle doesn’t reveal much of what goes on behind its doors. Frankly, SAI Connections initially seems like any other place that would counsel and house autistic children for a few hours every day, much like other therapy centres located all over Mumbai.

Then you get the chance to meet the centre’s director, Kamini Lakhani, and once she starts talking about what the Centre does and how it imparts training to parents of children suffering from autism, you begin to realise how simple and powerful the idea behind the Centre really is. Kamini says, “If you train a parent [of an autistic child to deal with autism], you’re training them for life. That training stays with the family forever.”

She should know. She and her husband, Anil, started SAI (which stands for ‘Support for Autistic Individuals) in 2004 for deeply personal reasons. “My older child, Mohit (in pic on left, with Kamini), was diagnosed with autism when he was three years old,” Kamini remembers. “I was completely devastated. I looked for information online and everywhere else. Then I gathered all the material I had collected and I remember flinging it in the doctor’s face, asking him how it was possible that such a bright, beautiful three-year-old boy could have autism…” she says.

After the initial phase of denial came slow acceptance. The couple was living in South Korea at the time, and made several trips to the US to get better services for Mohit. During this time, they truly began to receive an education about autism. “In the course of 15 years, I studied and trained to be the best teacher I could be for my own son,” Kamini says. She went on to become a board-certified Associate Behaviour Analyst, certified by the BACB (Behavior Analyst Certification Board), USA in June 2005. Four years later, she completed her RDI (Relationship Development Intervention) and is the only BCABA and RDI Program certified consultant in India.

She started SAI Connections in 2004 after moving to India in 2002. “I realised there was an urgent need for a Centre that would help not just autistic children, but also impart training to parents on dealing with the disorder,” she says. “Unfortunately, I still find that most intervention for autism in India happens at the level of special education and speech therapy – treatment for mental retardation. “Most people, even educators, have not heard of RDI for autism. We need to spread awareness about it to help the millions of children and their parents in the country,” she says.

What is RDI?

Relationship Development Intervention (RDI) is the process that ‘corrects’ the ‘feedback’ between an autistic child and the parent. “In a developing relationship, there is a ‘feedback system’ between the child and his parents. But with an autistic child, there is a breakdown somewhere. The child does not give feedback, so the relationship is skewed. As RDI consultants, we are trained to assess where this breakdown is, see how the parent is behaving,” explains Kamini. “This goes to the core of the issue and helps in normalising the relationship. We change what the parent is doing. This changes what the child is doing. Hence, we actually bring about a co-regulation in behaviour.”

“The disorder is hardest on those who are closest to the child – the parents,” Kamini explains. “Unfortunately in India, there is not much awareness about the symptoms of autism. Even teachers in schools are unable to spot the symptoms. A child suffering from autism is normally branded as a hyperactive, troublesome child by both parents and teachers.” She adds that their inability to socialise appropriately, their non-understanding or inability to interpret social cues and the fact that most of them can’t fit in with peers, sets them up for bullying in social settings. “We need to train schools and parents everywhere. Fortunately, we are slowly seeing that schools in Mumbai are getting more open to the idea of training teachers and hosting sensitisation programmes to deal with autistic children,” she says. The training, she says, needs to focus on dealing with aggression, or a change in behaviour.

What SAI Connections does

The Centre is an activity space for autistic children with active participation from their parents, and stresses on RDI. “We train them in art, cooking, vocational skills. There is also physical activity, a time set aside for music,” Kamini explains. “We have 25 special educators, one cccupational therapist, one speech therapist, five teachers’ assistants and a group of dedicated volunteers.” Parents must mandatorily be a part of the activities – they are invited to attend, be a part of the sessions or simply sit and watch. The Centre ensures transparency in functioning by involving parents in every step of the process, and every room has CCTV cameras that keep watch on all parts of the Centre.

SAI Connections has also, since last year, started a training programme for potential educators in RDI; this is a certification programme lasting over a year. “We have already trained four individuals, and many more have enrolled,” she says, adding that the programme involves training, working with families and providing consultations under supervision from programme directors, at a cost of about 9,000 USD per year. Kamini also receives many queries for online sessions and has already imparted training to individuals in Bangalore and Delhi.

“Ultimately, only proper training will help in a deeper understanding of autism. The numbers of autistic children are staggering, and so many more are not diagnosed yet. The biggest mistake people make is to think that children in the autism spectrum lack something. They are hugely capable individuals and we must never give up on them,” she says.

Connect with Kamini Lakhani at SAI Connections & SAI Child Development Center, 201, 2nd Floor, Bhagya Ratan Niwas, above Prabhu Jewellers, 3rd road, Khar (W), Mumbai. Call 022 2605 0992/ 26050991/ +91 98203 14925. Email sai.connections@ymail.com/ saiconnections01@gmail.com.

(Pictures courtesy SAI Connections)

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