A Professional’s Guide to Talking About Autism

Talking about Autism in  professional contexts should be done with utmost sensitivity and respect towards the individuals with the condition and their families. Having sat through assessments, consultations, education and health care meetings, annual reviews and planning meetings with familes and professionals, I have learned lessons of what to do and what not to do when it comes to talking about the said subject. I am aiming, through this article, to share with you what I have learned over the years.

1. It’s not an epidemic and no one is ‘suffering’ from Autism

Despite what the figures suggest, I do not consider Autism as an epidemic – it has been around for longer than we all think and we just got better at identifying it.

I would try to avoid using any negative terms at all when talking about Autism. Someone HAS Autism, but he/ she is not suffering. I prefer to call Autism as a condition, not a disorder or a disease.

Please note that I do not want you all to turn a blind eye on the difficulties that the individuals and their families are having at any point. Absolutely not! I urge you to acknowledge that. What I want you all to understand is that whatever it is that is happening now can be changed. Focus on what can be done (realistically) to make their situations better.

2. Individuals with Autism; not Autistic individuals

The jury is still out with this one – some actually want to be identified as ‘autistic’, as it is a major part of their identities, while some would like to be referred to as (for example) ‘a girl with Autism’. I always use the latter one, unless corrected by the individual or the family. I feel that by referring to them as ‘individuals with Autism’, I am acknowledging that there is more to them than having a diagnosis – that Autism is only a part of who they are. By doing so, I believe that I am opening up the opportunity for others to truly discover who the person really is as a whole.

3. Avoid using ‘High/Low Functioning’ and ‘severely/mildly Autistic’

I myself am guilty of this until recently. First of all, I know that levels of functioning depends (in a large part) on the individual’s IQ score. However, I began to understand that IQ is only a part of who they truly are.

I understand that levels of functioning may give professionals and parents a common language/ reference point to which they can base an individual’s set of abilities. But I feel like this should be avoided as it is misleading. I have met many people with Autism who have overall IQs of less than 70 but are amazing in specific things. One may be ‘low functioning’ but it does not mean that they cannot (or are not) good at something.

What I find helpful is to look at the overall picture. Try to understand every context, every behaviour, every aspect of the individual’s life. Then, if you need to talk to the individuals with Autism and/ or his/ their families, you should pinpoint the areas in which they have strengths and the areas in which they need to improve. Not only will you be able to offer a much better informed solution (if that’s what’s needed), you may also make the families feel that they were listened to.

4. SHUT UP AND LISTEN!

As professionals, most of us are eager to offer advice. But having spoken to a lot of families over the years, what they appreciate is being listened to – genuinely and empathically. I advise you to take a step back and listen to what they are saying before speaking or making your mind. Clarify what you heard and don’t be afraid to ask questions to ensure that you truly understood what they meant.

5. No two individuals with Autism are the same

I know that you all may have read/ heard this before, but I want you to always keep this in mind. No matter how many people with Autism you have met, the next one would be completely different from the others. Never assume that you already know what to do. I suppose if you want to stay true to this advise, you would follow number 4.

Final comments

All of what I have said may not be a unique revelation to many of you. However, I feel like I owe it to the Autism community to remind you (and myself) of all of them. I know that we all want the best for the people we work with, which is why I am confident that the Autism community is in safe hands.

Please feel free to contact me and/ or leave comments if you wish to discuss anything further.

 

Advertisement

Serious problems on child and adolescent mental health services

Officials warn that the whole of the UK’s mental health services for children and adolescents have serious and ingrained problems. Read the full article from the BBC HERE

Luis Suarez is not Autistic

Luis Suarez, an accomplished footballer who plays for Liverpool in the UK’s Premier League and for Uruguay’s National team is in the middle of yet another media storm because of his actions yesterday. In Uruguay’s World Cup match against Italy yesterday, Suarez bit Italy’s Giorgio Chiellini  in the shoulder. Suarez has a terrible history of biting players during a football match. Today, the Mail Online reported that Suarez has been charged  by FIFA for biting an opponent and could potentially be slapped with a two-year ban.

As if this story isn’t disturbing enough, I have found that my blog has been viewed hundreds of times yesterday when people entered the search terms, ‘Luis Suarez Autistic’. I find it offensive that some people would quickly assume that someone who displays inappropriate behaviours that Suarez did, is autistic.

Why would they? Is it because they have encountered someone with Autism who has the tendency to bite when they are angry? Yes, some people with Autism may have that tendency, but not everyone with Autism does so.

Is it because Suarez has been doing this exact same thing and he seems not to have learned? That’s not a sign of Autism.

Is it because he is unable to control his emotions whilst also not understanding social norms? Those may be signs of Autism but one needs to look at the whole picture and observe individuals in different contexts to see whether the behaviour and understanding are constant.

Even though I am extremely offended, I understand that I may be over-reacting. I am here to educate and not moan. A diagnosis of Autism requires a lot of tests, conversations and observations. Observing someone on a football field is not enough to warrant a diagnosis. Also, inappropriate behaviours are caused by a lot of factors, which makes it impossible to pin it down to a specific condition.

I hope this clears things up somehow.

 

I am still Autistic: John Hall’s TEDtalk

Lewis Hamilton’s Mind Needs to be Stronger than Ever

(image taken from telegraph.co.uk)

Daniel Ricciardo of Red Bull has won the dramatic 2014 Canadian Grand Prix ahead of Mercedes’ Nico Rosberg and four-time champion Seb Vettel. The win is Ricciardo’s first in the top ranks of motorsport. While he is extremely elated with his result, I suspect that Nico Rosberg is the happiest man in F1 at the moment. Not only has he managed to take second place in an ailing car, he now leads this year’s drivers’ championship race by 22 massive points from his teammate and former champion, Lewis Hamilton.

Rosberg started on pole but Hamilton made a better start, only to be out-smarted by Rosberg in the first corner. As Lewis avoided a collision, he fell to third place behind Vettel. Things started to look better after the second round of pit-stops when Hamilton emerged ahead of Rosberg, but his brakes malfunctioned which forced him to retire. Nico had similar problems but he and his engineers managed the situation better.

If Lewis wants this championship, he needs to keep his head in the right place. He had the lead of the championship prior to the race in Monaco, but he now trails by 22 points. There are 12 more races to go. That’s 325 points up for grabs (double points on the last race). Lewis needs to forget Canada and Monaco pretty quickly and turn his attention to Australia and beyond. All is not lost, as they say. But people, like myself, who have followed Lewis’ career all these years know all too well how volatile he can be. I have noticed how unfortunate events sometimes get the better of him and his racing performance. He needs to control his aggression.

There is no doubt that he will sleep very little tonight, knowing that he could have won this race. But Lewis needs to realise that today’s result was not his fault. He drove superbly, but his car failed. He needs to channel his frustrations into positive energy.

(image taken from racingfanatic.net)

I am a huge Hamilton fan since 2007 and I want to see him win a championship this year. He has the speed, technique and the hunger. He has the car underneath him, but he also have an extremely talented and cerebral teammate who is ahead of him at the moment. Lewis has beaten Nico time after time in the past, and I can tell that Nico is also hungry for success this year. My only concern is Lewis’ mental strength. I wish he could keep his cool, keep his focus, and concertrate on doing the best he can.

Come on Lewis, you can do it!

UK Supermarkets Asda and Tesco Apologise for Disgraceful and Offensive Costume

UK supermarket giant Asda has apologised for their hugely inappropriate halloween costume marketed as the ‘Mental Patient Fancy Dress Costume’  which featured fake blood, a mask and a fake meat cleaver. They have withdrawn the sale of the said product and pledged to donate £25,000 to Charity Mind after they were bombarded with tweets from offended individuals such as ex-footballer Stan Collymore and charities such as Rethink Mental Illness.

Tesco, who had a similarly absurd ‘psycho ward’ costume (boiler suit, mask and machete) also withdrew their product subsequently and like Asda, have issued offical apologies.

As an advocate for teaching mental health awareness and diversity, I am hugely offended and horrified by the sale and  advertisement of the costumes. We are still living in an age where people with mental illnesses are stigmatized, and stupid publicity stunts such as this is totally unacceptable. Not only does it fuel the negative stereotype but it also gives the masses an opportunity to publicly mock those who are living with mental illnesses. I am sure that they are aware of the fact that several people have killed themselves because they could not live with the stigma.

In addition, neither of these costumes accurately depict people with mental illness. Having visited many psychiatric wards and mental institutions, and having worked with people with psychiatric conditions, I have not seen anyone who dressed and looked like the pictures on Asda’s and Tesco’s  advertisements. The mentally ill need support, understanding and acceptance. They certainly do not need any public mockery such as this. Apologies and donations are not enough.

DSM 5 and its implication to Autism Spectrum Disorders (ASD)

The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), also known as the ‘bible of psychiatric diagnosis’ has been approved last month. Although the actual publication will not be until May of this year, the revisions seems to be final.

Along with this new revision is a major overhaul of the diagnostic criteria and a new conceptualization of Autism Spectrum Disorders (ASD). The proposed changes have been based on a large body of research and have been discussed by qualified professionals. They are aimed to improve the diagnosis for ASD and to aid professionals to give specific interventions to specific needs of each individual.

Here are the changes:

1. A blanket term of Autism Spectrum Disorders will be used. Asperger’s Syndrome and Pervasive Developmental Disorders Not Otherwise Specified (PDD-NOS) will be removed- The DSM-5 panel decided to remove the sub-categories of ASD since there is no sound evidence to suggest that there really is a need for them. For instance, people with Asperger’s Syndrome and High Functioning Autism are not substantially different from one another, i.e. their symptoms overlap a lot. Additionally, PDD-NOS is not very clear and diagnosis varies from one professional to another- you can be diagnosed with PDD-NOS with mild symptoms or only one or two symptoms.

It is important to note that people who are currently diagnosed as having Asperger’s Syndrome  and PDD-NOSwill be given a new diagnosis after re-evaluation. I personally believe that this change will have a significant effect on people with AS and PDD-NOS since a large number of them identify greatly with their diagnosis (although some welcome the change).

2. No longer a TRIAD of IMPAIRMENTS: Most of the literature in Autism describe it as having three main symptoms: Communication impairments, Limited Imagination and Repetitive Behaviours, and Impairments in Social Interactions. In the DSM-V however, it is reduced into two. Firstly,  Social and Communication Domain- which combines social interaction aspects and verbal/ non-verbal communication aspects. Secondly, Restricted and Repetitive Interests and Behaviours, which includes  ‘Stereotyped and Repetitive Speech’ and ‘Hyper- or Hypo-Sensitivity to Sensory Aspects of the Environment’. It is important to note that deficits in each of these areas must be ‘impairing’ before one can be diagnosed with Autism.

3. Symptoms may not fully manifest until demands exceed capacity: Although the DSM-V requires most symptoms to be present in early childhood (before age 3), it also acknowledges that children may not have other symptoms because of their environments, or any other reason.

4. Clinicians should include Specifiers: Along with an ASD diagnosis, clinicians will be asked to include a description of each children in order to monitor the onset and (if applicable) the progression of each determinants. Specifiers include Intellectual Ability, Language Competence, Motor Co-ordination, difficulties in Literacy/Numeracy, and other disorders.

Sources:

Autism Speaks

American Medical News

DSM5.org

More on Autism:

He flaps his hands and screams a lot but he doesn’t mean to annoy you

Optimum Outcomes for people with Autism

Diagnosing Autism: What you need to know

Vote for Miss Montana 2012, Alexis Wineman

What does Autism mean?

What is PDD-NOS?

Communication difficulties in Autism

Big Bang Theory’s Sheldon Cooper: Asperger’s Syndrome’s Poster Boy?

Still unsure if Sheldon has Asperger’s?

DSM-V and Autism

The Autistic Me: BBC Documentary

Temple Grandin: The world needs all kinds of minds

Autism in the classroom:

Guide to parents of students with ASD on coping with the first day back to school

Common signs of Autism in the classroom

First day back to school: Top tips for parents of children with Autism

Practical tips to make your classroom Autism-Friendly

Inspiring People with Autism:

Dr. Temple Grandin

Jessica-Jane Applegate (British Paralympian)

Satoshi Tajiri (Pokemon creator)

Carly Fleischmann

More on Savants:

The Psychology of Savants: Memory Masters

Artists with Autism

The Einstein Effect: Is there a link between having Autism and being a genius?

 

Photo taken from debutart.com

What is Pervasive Development Disorders Not Otherwise Specified (PDD-NOS)?

Pervasive Development Dosorders Not Otherwise Specified (PDD-NOS), along with Asperger’s Syndrome (AS) and Classic Autism, is a part of the Autism Spectrum. People who are diagnosed with PDD-NOS exhibits symptoms which are similar to those who have Autism but at the same time, do not exactly meet the criteria for AS or Classic Autism. In other words, when there is not enough evidence to support a diagnosis for Autism, yet the symptoms are pronounced enough, individuals may get diagnosed with PDD-NOS. It has been criticized as being a catch-all diagnosis.

DSM-IV-TR’s Definition

The DSM or the Diagnostic and Statistical Manual of Mental Disorders define PDD-NOs as follows:

“This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific pervasive developmental disorder, schizophrenia, schizotypal personality disorder, or avoidant personality disorder. For example, this category includes “atypical autism” –presentations that do not meet the criteria for autistic disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these.”

It should be pointed out that at the time of writing, professionals do not have a consensus as to how to correctly diagnose PDD-NOS and that there are not many succint diagnostic tools available. Academics and professionals alike criticize the DSM-IV-TR’s definition as being too weak.

Helpful PDD-NOS reading materials:

PDD-NOS checklist (read skeptically)

Volkmar et al. (2004) Autism and Pervasive Disorders (Free access Academic Journal Article)

Quinn (2000) Pervasive Developmental Disorders: An Altered Perspective (A book worth buying)

More on Autism:

Vote for Miss Montana, Alexis Wineman

What does Autism mean?

Communication difficulties in Autism

Big Bang Theory’s Sheldon Cooper: Asperger’s Syndrome’s Poster Boy?

Guide to parents of students with ASD on coping with the first day back to school

Common signs of Autism in the classroom

Inspiring People with Autism:

Dr. Temple Grandin

Jessica-Jane Applegate (British Paralympian)

Satoshi Tajiri (Pokemon creator)

Carly Fleischmann

More on Savants:

The Psychology of Savants: Memory Masters

Artists with Autism

The Einstein Effect: Is there a link between having Autism and being a genius?