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5 questions about autism and how to ask them

There’s no such thing as a stupid question‘. I mean sure, when you are in education. But we all know there is such a thing, and we experience it every day. For example, when your tummy is rumbling and someone asks if you’re hungry. Or when you hit your knee/toe and someone asks if it hurts. Or ‘Would a fly without wings be called a walk?’. No.

One of the great things about awareness is that it gives you the knowledge to transform a stupid question into a meaningful enquiry. So, here are 5 stupid questions I’ve been asked about autism and how you can turn them into meaningful enquiries.

  1. Have you tried disciplining him?
    • Apologies stranger, I can’t hear you over my child writhing in sensory pain and screaming bloody murder in the middle of this busy supermarket parking lot.
    • Think: How will taking away his favourite toy, switching off his favourite music or making him stare at the wall for 20 minutes cure his sensory sensitivity? Discipline is taught when children are naughty. For example, when I was a child and I was disciplined by my parents because I’d done something they had expressly told me not to. Being overwhelmed by sound, smell, colour and touch is not something people with sensory overload can control. Christos wasn’t reacting to an instruction or a restriction with his tantrum. He was reacting to physical pain. You can’t discipline him for that just like I can’t discipline you for asking that question.
    • Meaningful Enquiry: What’s bothering him/her?
  2. Maybe he’s just hungry/thirsty?
    • Thanks.
    • Think: Every parent is paranoid about their child’s nutrition. With autism and sensory overload you have the additional hurdle of them not eating everything and their heightened sense of taste. The second post I wrote for this blog was about Christos’ food – Best Food Critic in Town – and the Gluten-Free diet. My dad spent hours developing new recipes which incorporated all the vital nutrition he needed and adding it to the 5 things he agreed to eat (egg and lemon soup, pasta with tomato sauce, curry, chocolate cake and halloumi). It got to a point where our mum and dad’s food was so delicious, he wouldn’t eat at a restaurant. We took food with us; hell, we tool grated halloumi with us. He’s obviously a lot better now, he eats salmon, cremes, chicken, fish curries. I think the weirdest thing he doesn’t eat is potatoes. But hey, I don’t eat beef so I guess we’re both weird. When they are young PECS is a massive help in terms of communication and hunger. I definitely recommend implementing it at home, but also having a travel version for trips to the restaurant or market.
    • Meaningful Enquiry:  Can I get them something they like?
  3. Autism? Does that mean he’s really good at maths?
    • Maybe.
    • Think: No two people on the spectrum are the same. Chris is good at math, but he’s also really good at other things. He has great memory, an amazing sense of direction and he can cook. Stereotyping people on the spectrum and not realising that, just like all of us, they can be unique in their abilities is one of the biggest downfalls of understanding autism and befriending someone on the spectrum.
    • Meaningful Enquiry: What does he/she like to do?
  4. Does he/she understand? 
    • Do you?
    • Think: Yes, they understand. It takes time, alternative therapies, PECS, speech therapy, studying, learning, testing, preparing etc but yes, they understand. Just because someone doesn’t speak your language doesn’t mean they have nothing to say. That’s what autism is, a different language. All we have to do is understand it. There are so many unanswered questions, facts, about autism that we have yet to come to grips with.
    • Meaningful Enquiry: How can I tell them [something]?
  5. What’s wrong with him?
    • The short answer is: That question. That is what’s wrong.
    • Read: Autism has been in the limelight over the last few years. Just a Google search of the word and you get articles, organisations, news items etc. The basic information is there. I have so much admiration and respect for all the parents (including my own) who raised extr-aut-inary humans without this information so readily available to them.

For those of you who are willing to go the extra mile, I will be starting the Autism Awareness Diploma with Online Academies which is currently on Groupon for £19. Netflix is also streaming a new series in August called ‘Atypical’.

Learn, read, educate yourselves. Read/watch the sad stories, the happy ones, the scientific ones. Each one has something to teach you.

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Mr Moustache

Christos just had his first shave.

I begged my mum to do it while I was there, she didn’t want to admit he was growing up; neither did my dad. So for the 2 weeks I was there I spent my days with a little (not so much), moustached gentleman.

It’s scary how quick they grow up.
Cherish every moment, every word, every tantrum, every little thing you’ve had to do a million times over. Love your kid, cos one day you’re gonna wake up and they’re gonna grow up and it’s going to make you cry.

Mr Clean Face

IMG_5610.JPG

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15 answers about Autism

19 days left of Autism Awareness. On Monday I’m flying back home, so I’ll focus on his day-to-day activities. For now and for the two days I missed, I want to write straight answers to straight questions and see if I can make it to 100? Here goes:

1) What is the Autism Spectrum? The autism spectrum or autistic spectrum encompasses a range of conditions classified as neurodevelopmental disorders. It is best described as a collection of developmental disorders that affect the brain. Autism occurs in all racial, ethnic & social groups. I think it’s best – rather than categorising these diagnoses – to refer to diagnosed disorders that fall underneath the autism spectrum umbrella. Individuals with ASDs are best represented as a single diagnostic category because they demonstrate similar types of symptoms and are better differentiated by dimensions of severity.

a) Autism: Is often seen as the core of ASD

b) Pervasive developmental disorder – not otherwise specified (PDD-NOS): A diagnosis made when symptoms of both Autism and Asperger’s is present.

c) Asperger’s Syndrome: A milder form of ASD

d) Rett Syndrome: Rare and severe neurological disorder which affects more females than males

e) Childhood disintegrative disorder (CDD): Rare and sever developmental disorder

2) What’s the prognosis? Its life-long. It upsets me when I hear people insist that Autism is a disease that can be cured. No. It can’t. It can get better with the hard work of the family and the child but there’s no magic potion or injection to cure it. The most important prognostic factor is their IQ. However, if you want to know how far they can develop I would suggest monitoring their progression in the first year after they get diagnosed. Early diagnosis, early treatment, no-stop attitude can improve disability, speech impairments and social interaction.Corny as it may sound, the best treatment for Autism are love, patience and persistence.

3) Other disorders with the same symptoms? When a paediatrician is treating a child because it hasn’t spoken yet, they must consider different diagnoses – anything associated to language delay. This list can include: hearing loss, mental retardation (down syndrome, Fragile X syndrome), epilepsy related disorders, childhood schizophrenia, tuberous sclerosis (benign tumour growth in organs), Williams syndrome (genetic condition that causes developmental delays but no social impediments). This is why you need to diagnose them as soon as possible. Get second, third, fourth opinions; a solid diagnosis is the first step.

4) What symptoms should parents look for? No two people with Autism have the same symptoms; various combinations each ranging from mild to severe. Look for: resisting physical attention, unresponsive to commotion, no eye contact, uninterested in other children, echolalia (involuntary and meaningless repetition of sounds/words), other forms of repeated behaviour (playing with same toy for days, watching same video/listening to same music), body rocking, hand flapping, different postures (toe walking).

5) How is Autism Diagnosed? Since there is no blood test to facilitate diagnosis, doctors resort to behaviour based diagnoses. So, observing their communication, behaviour and developmental levels. The second stage is observation by a paediatrician, a neurologist and speech, physical and occupational therapists. What is often referred to as screening is a procedure where there has been a thorough examination of the child’s and parents medical history, physical examination, and testing for any of the mimic disorders mentioned above.  So, numerous doctors poking around him evaluating his reactions, social skills and communication capabilities. So, multiple sets of brain scans, lead screening, audiograms, tympanograms, multiple sets of brain scans, EEG testing. I think the worst thing about the diagnosing process is the process of elimination.

Remove the fear of the Autism label. The more time you spend fearing Autism the more it will consume your child. You don’t want to live a life where you regret not getting a diagnosis as early as possible.

6) What do studies say about the link between Autism and vaccinations? This whole school of thought started when data was misrepresented and allegedly showed that the Measles, Mumps and Rubella vaccine had a direct link to the increase in Autism cases. Read more

7) What can parents do about their children’s immunisations? One word – Research. Familiarise yourselves with the information available on vaccinations. Don’t rely on isolated reports about vaccines and supposed health consequences. Don’t delay vaccines to your autistic child or younger siblings until more studies are performed. In 2000 – 2002 in the UK, Germany there were measle outbreaks following parents refusal to vaccinate their children.

8) What can mercury exposure cause? Obviously mercury exposure is dangerous for anyone and can resilt to neurologic illness. A preservative called thimerosal is used in vaccinations. This has led to a concept that mercury can cause autism. Mercury exposure occurs in our day-to-day environment (burning of waste, fossil fuel). Tiny amounts of mercury, like the ones found in vaccines are found in the air, the water and food; therefore there is no direct link between mercury and autism. Read More

9) What are the therapies available? Applied Behaviour Analysis, Treatment and Education of Autistic and Related Communication Handicapped Children, Speech & Language therapy, Picture Exchange Communication System, Makaton (communication programme that involves using signs and symbols in support of spoken language), Psychological therapy.

 More details

10) Tips on early communication? Use your child’s name so they know you are addressing them – if you use it often enough, or get their attention when you say it, they’ll start responding to it. Keep language simple – using single words, speaking slowly and clearly with pauses between words. Accompany everything with simple gestures. Allow extra time for your child to process what you have said. 

11) Which ones are the most useful? We used language therapy, TEACHC, PECS, Makaton… You know what? We used all of the above. It depends on which one works best for your kid.

12) What about unproven treatments? 

Special diets – Done it, https://christos90.wordpress.com/2013/08/07/best-food-critic-in-town/ .

Neurofeedback – Done it. where brain activity is monitored (usually with electrodes placed on the head).

Auditory integration training – Done it. a therapy that involves listening to music that varies in tone, pitch and volume.

Omega 3 – Done it.

Hyperbaric oxygen therapy – Done it. treatment with oxygen in a pressurised chamber. 

Facilitated communication – Done it. where a therapist or other person supports and guides a person’s hand or arm while using a device such as a computer keyboard or mouse

13) Are medications necessary? Depends on the child. Some autistic children suffer from epilepsy, ADHD etc. Unless they need it, I would strongly suggest NOT using medication to monitor their behaviour. It breaks your heart. Just take each day as it comes.

14) What types of medication would be used? Vitamins (Vitamin C, Iron etc), natural supplements, Omega 3.

15) Will these make a difference? YES. It might be small, it may take months of tantrums, yelling and constant pressure but it’s worth it.

Start early, educate yourself. Get them diagnosed.