Tag: autism

Autism

Showing up when you feel like you can’t

Post author By The Metrognome
Post date February 11, 2015
No Comments on Showing up when you feel like you can’t

Dealing with autism in your child is more than a daily challenge – but what doesn’t challenge you, won’t change you.

by Kamini Lakhani

Part 6 of the Autism Diaries – It’s when you go on when you think you can’t that defines who you are

Recently, I had ‘one of those days’. You know, when everything seems to be going wrong. There were difficult meetings, distraught moms, family issues…

The thing about being professional is that you have to ‘show up’ – and show up with a smile!

Meeting 1 was with the family of a 14-year-old, a case of High Functioning Autism, integrated into regular school. What could be the problem? It turns out: plenty. He’s being bullied at school, which is causing him and his parents tremendous stress. Added to this, he has an elephantine memory (not good in this case). So he remembers everything that was said to him since grade 3! He suffers from low self esteem, too. He can’t state one good thing about himself. Imagine how badly his psyche has been affected.

I totally understand what the parents are going through. When you’re just this distance away from ‘recovery’, it is the most painful! So near…and yet so far. His mother was experiencing a real low that day. In all my years of working with her, I had never seen her break down like this.

Meeting 2 – with a mom of an 18-year-old delightful young lady who has come a long way. Mom was upset after attending a wedding. There was nothing really ‘wrong’. But what was creating turmoil within mom, were her own feelings. Seeing her daughter with her ‘normal’ cousins brought up the pain again. Why wasn’t her daughter like her other cousins? Would she ever make plans with friends and go out? Would she ever get married?

Both scenarios shook me up. I understand what low self esteem feels like. I’m afraid of the damage and the repercussions on the child. I understand what Mom 2 felt, too. My nephew is exactly the same age as my son – they were born just three weeks apart. As much as I count my blessings, it hurts that my Mohit did not go to university and that he may never marry and ‘settle down’ like his other cousins.

We’re working on the best outcomes for all our families. At that point of time, both mothers were looking for reassurance and understanding. I wanted to hug them and say “I understand”. What I did not want to do was give superfluous advice. It had to be heartfelt. It had to be something that I had experienced, or else, it would be empty.

What had I experienced that helped me emerge from the blues? I thought of my yoga class (my favourite!). Once a month, my teacher gives me a free hand to push my limits and do as many ‘Surya Namaskars’ as I want. I take the challenge to push myself to my maximum limits. I come up with a number that is beyond my capacity. I may feel that I’m about to collapse, that I should stop. But I don’t. I want to nail it. I want to feel the exhilaration and the rush. I want to experience the joy of victory and of pushing myself off the cliff!

So where I am going with all this?

When I achieve something that is physically very difficult for me, it gives me the courage and the confidence to undertake something that is mentally challenging. The mental follows the physical. After a strenuous class like this, my mind state is altered. I can deal with what I’m going through. I’m in a high-life state. The common factor is the determination to continue – especially when the going gets tough.

Here is what my spiritual mentor Dr Daisaku Ikeda says:

“Whether we regard difficulties in life as misfortune or whether we view them as good fortune depends entirely on how much we have forged our inner determination. It all depends on our attitude or inner state of life. With a dauntless spirit, we can lead a cheerful and thoroughly enjoyable life. We can develop a ‘self’ of such fortitude that we can look forward to life’s trials and tribulations with a sense of profound elation and joy. Come on, obstacles! I’ve been expecting you! This is the chance that I’ve been waiting for!”

I’m certainly not there as yet, but I would definitely want to be. We have to remember that we are running a marathon and not a sprint. And that’s exactly what I told these incredible moms. Are we going to ride these waves of adversity, or are we going to drown?

Have you experienced something like this? Have you thrown yourself off a ‘cliff’ and emerged stronger? I would love to hear your view point. And if you have questions related to autism and other learning conditions, feel free to email me at saiconnections01@gmail.com. I will be glad 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: Why we hurt ourselves and people we love and how to fix it.

(Pictures courtesy stemcellforautism.com, www.parentingnation.in. Images used for representation purpose only)

Tags autism, child with autism, dealing with autism, kamini lakhani

Autism

When less is more and more is less

Post author By The Metrognome
Post date February 4, 2015
4 Comments on When less is more and more is less

It took a child on the Autism spectrum to explain life’s true meaning, help evaluate my close association with autism.

by Kamini Lakhani | saiconnections01@gmail.com

Part 5 of the Autism Diaries – When a 9-year-old explains life to you.

A few years ago, I was working with this student who was around 9 years old at that time. We had spent a wonderful hour together and I had managed to test out some very important hypotheses with him. In that relaxed state of mind, I mumbled, mostly to myself, “You know, in your case, less is more.” I glanced over at him and asked, “Do you know what that means?” not expecting an answer. He answered, “Yes, less is more, and sometimes more is less.” I almost jumped out of my skin! A simple truth, but spoken so sincerely and almost philosophically! Needless to say, I will never forget this statement or the wisdom that it was spoken with.

Since then, I’ve applied the ‘less is more’ philosophy to many aspects of my life. So, recently, Bill Nason (Author of ‘The Autism Discussion Page’) put up a very interesting question on Facebook. He addressed ‘veteran’ parents (with older kids/adults on the Autism Spectrum) about what they would like to share with parents with newly diagnosed kids. There were interesting recommendations, all spoken through experience, and hence all valid.

I did not answer immediately, as I had a hundred thoughts running through my mind. If I had a chance to redo my innings with autism- what would my top 3 recommendations be? What would I do differently?

1. I would take more care of myself when the diagnosis came in.

The diagnosis of autism is a deadly one. It takes so much from a parent, who, at that point of time, is devastated. I remember crying myself to sleep and waking up crying. This went on for a few days…till there were no tears left. Yet, in that frame of mind, one only wants to help the child and do whatever it takes to somehow ‘throw this diagnosis off’.

I recommend that all parents book themselves for a few sessions with a counsellor or a Mental Health Professional. Work on yourself, strengthen yourself first. You don’t need the guilt. Hand holding is required through one’s own grief too.

And then, get ready for the marathon.

2. Make sure you continue to spend quality time with your other children, too.

If there is one thing that I would definitely redo, it would be spending more time with my daughter. Sometimes, I feel I was so overwhelmed with Mohit’s diagnosis, that I was not a 100 per cent present with my daughter, Tanya. To date, she says that I love Mohit more. Much as I try to explain that I don’t love him more, that he needs me more, it doesn’t quite sink in.

Parents who are working with the RDI (Relationship Development) Programme under the guidance of a consultant are far luckier. The consultant is trained to look at their daily schedules and make valid suggestions with regards to spending time with their other children and leading a more balanced life.

3. Be selective with therapies.

One size does NOT fit all. Don’t jump on to the band wagon of speech, special ed, OT etc. These are all helpful therapies, but they are more useful with better understanding of your child and what he or she really needs. Take help from an expert who will help you understand Autism better, somebody who will take an objective look at your situation and make the right and useful recommendations. A customised programme is required, not a trial and error program.

There are several permutations and combinations that will apply to your child. There are the Core Deficits and then there are the Co-occurring Conditions. The co occurring conditions are different for every child on the Spectrum, hence you may see this diversity in people on the Spectrum. (See rdiconnect.com for more information)

I was not aware of this at that time and hence I tried everything that the Western World had to offer. Definitely, I could have been more selective. I should have studied more and tried less.

This is where I feel the ‘less is more’ concept really works!

Here is something that really resonates with me-

“Parents have therapists come in their home and tell them what to do.

They give their power away.

Parents need to focus on healing and empowering themselves. They must shift their beliefs about autism. Once the parent knows who they are….the child will respond.”

– Lori Sheyew

Do you know who you are?

And what resonates with you?

Less is more… or more is less?

At SAI Connections, we follow the RDI technique, which not only helps children on autism spectrum but their parents as well. Feel free to send questions on your mind to saiconnections01@gmail.com and I will be glad to help.

Next: The one thing that makes you stronger with time…and it’s not experience.

(Pictures courtesy www.fwdlife.in, www.dnaindia.com. Images are used for representational purpose only)

Tags autism, autism spectrum, kamini lakhani, mumbai, RDI, SAI connections

Autism

When they look right into your soul

Post author By The Metrognome
Post date January 28, 2015
1 Comment on When they look right into your soul

People on the Autism spectrum have a keener sense than ‘neuro typical’ people do, and are, surprisingly, more intuitive too.

by Kamini Lakhani | saiconnections01@gmail.com

Part 4 of the Autism Diaries – When my son gave me the solution to something I was struggling with for years

A child on the autism spectrum may be more clued in to the world than you think.

It was my routine ‘work hour’ with Mohit, my son. It’s a time that I enjoy – a time that spells relaxation for me, as I need to slow down and be aware of the guiding happening between us. So, we had just finished cooking something and I noticed that Mohit went and brought his iPad and started playing a memory game on it. He took his time and I realised that this was what he did to just chill and regroup. I thought of how important a tool this was for him. He realised when he had had enough and more importantly, he knew what he needed to do to prepare himself for the next interaction.

Soon after, I was working with another student. We were building on coordination by playing drums. Whenever he found the interaction overwhelming, he would get up and pace around. I realised why he was doing what he was doing. All I needed to do was to give him his space and he came back to engage with me whenever he was ready.

In both the above cases, the boys knew when to take a break. They knew how much their system could take. They seemed to be minutely aware about this. I thought about myself: I mostly overshoot. I don’t have as keen a sense as they do.

Case in point – I was in a yoga class and my teacher asked me to do a certain asana which involved raising my head while I was lying on my back. I found it a little uncomfortable around my neck. Sensing my discomfort, she asked me to put my head down as soon as I felt the need. Well, I did not feel the need for two minutes! Believe me, this is a very long time to hold an asana. As soon as I put my head down, I felt a nerve pull. That was it! I was uncomfortable all evening and the next day as well. Somehow, I managed with ointments and painkillers. The following day was even worse, so I finally cancelled two appointments and went to see my doctor.

They’re more aware than we realise

Now, I’m going to make a point that is a little controversial. At some level, I feel people on the Autism spectrum are more ‘aware’ than we give them credit for. They perceive in a different way and sense things that you and I may not be able to sense. This, somehow, does not make sense to my ‘scientific’ brain – but it is something that I feel deep within. In living with Mohit, I know it to be the truth. Couple this with the fact that they all love unconditionally. I feel that I’m living and interacting with highly spiritual and advanced beings. Yet, there are deficits in terms of expression of feelings and ‘behaviours’ that may not be appropriate.

Below is something that I am going use to substantiate what I’m trying to say.

Some of you may have heard of Suzy Miller. She refers to autism as ‘awesomism’. Take a look at the following excerpt from her that is titled, ‘10 things your children want you to know’:

Our behaviors rarely mean what you think they mean. Awesomism changing the world.
We experience so much more than meets the eye.
We feel our way through life, instead of think our way through.
What you say matters very little to us, unless it matches how you feel.
We are right brained, creative and connected to something bigger.
We are communicating long before we talk.
We constantly reflect the inner life of those around us – even you!
The best way to connect with us is by being present.
We are showing the world what no longer serves humanity.
We are different but we are not disordered.

Once you understand and apply this awareness, our life together becomes an awesome gift to be shared. To get more information about Suzy Miller and her work, please visit her website.

So, this evening, as I was chatting with Mohit, here’s what I told him.

“Let’s make a pact, buddy! Just be yourself and reveal these higher truths to me. As a trade off, I’ll teach you about communication, understanding of relationships and figuring the appropriate cues of this world.” He looked at me very deeply as I said this. As if he was looking deep into my soul.

Do you have questions related to autism spectrum? Feel free to drop me an email at saiconnections01@gmail.com and I will be glad to help.

Next: When a child on autism spectrum understands the deeper meaning of life better than us.

(Pictures courtesy www.autism-india.org, topnews.ae. Images are used for representational purpose only)

Tags autism, awareness in an autistic child, kamini lakhani, mumbai, SAI connections

Autism

He talks of aircrafts, but doesn’t understand relationships

Post author By The Metrognome
Post date January 21, 2015
No Comments on 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.

by 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:

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?

©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).

Now consider ‘relative thinking’.

Think 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.

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

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

Tags autism, autism diaries, dr steve gutstein, dynamic intelligence, fMRI, kamini lakhani, SAI connections, static intelligence

Autism

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

Post author By The Metrognome
Post date January 14, 2015
No Comments on 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.

by 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?

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:

Verbal and non-verbal communication
Social awareness and interactions
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.

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.
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.
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.
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.
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’.

Recognising 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 10^th 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:

Speech or language difficulties? No speech? Delayed speech? Echolalia?
Do they have sensory issues: over sensitivity to sounds, lights and textures?
Motor difficulties: fine motor? Gross motor? Motor planning?
Emotional regulation difficulties: anxiety, depression, aggression?
Physical or diet related difficulties: allergies, limited diet?
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.

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

Tags autism, autism spectrum core deficits, kamini lakhani, mumbai, SAI connections

Autism

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

Post author By The Metrognome
Post date January 7, 2015
1 Comment on ‘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.

by 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:

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.

Take care of yourself – physically and mentally. I definitely suggest counselling for parents with newly-diagnosed children.
Go through the grieving process and accept the diagnosis.
Please do not be afraid of the stigma. We need to educate ourselves, our families and the communities that we live in.
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.
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.

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)

Tags autism, dealing with an autistic child, diaries, kamini lakhani, mumbai, SAI connections