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.

 

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Is Dexter Morgan a Psychopath?

Dexter Morgan is a fictional character from the hit TV Series, Dexter. Dexter works in the forensics department of Miami Homicide as a blood spatter analyst, and he moonlights as a vigilante serial killer. He lives by the ‘code’ of his father – never get caught and only kill bad people (amongst other things).

His work is meticulous. He makes sure that the people he kills are all guilty of a crime before he decides to kill them. He does his best not to get caught. The catch is that he does not feel remorse and lacks empathy. He is able to put a straight face right after his ‘adventures’. He is charming, shy and extremely intelligent – much like every psychopath portrayed in the media.

However, when subjected to Hare’s Psychopath Checklist (1991, 2003)- one of the accepted checklistsused to identify psychopaths, Dexter scores poorly. Despite all the terrible things that Dexter has done, I would not identify him as a psychopath. Unlike actual psychopaths, Dexter is capable of maintaining relationships throughout the series. He was very close to his sister and was a good, loyal husband to Rita. He was also academically successful and was able to keep a career for a very long time. His lab reports were mostly of excellent standard and he was considered as an expert in his field. In addition, the voice-overs throughout the show reveals that Dexter kept on analysing his life. He was trying to make sense of almost everything that happened to him. This is unlikely to be the case in real-life psychopaths as most of them seem disinterested in self-reflection and self-awareness.

If you have seen the series, I invite you to try to score him up on this LINK.

So what is he if he’s not a psychopath? I’m not too sure, in all honesty. I think he serves as a reminder that not everyone you meet is who they seem to be. He’s a chilling reminder of what people are capable of and how vigilant we should all be.

A Story That Needs to Be Told: Stephen Andrade-Martinez

Click HERE to watch Stephen’s story.

“Stephen has Autism, and has a history of displaying behaviour that challenges. Living at home with his parents and 2 siblings, his family were able to manage Stephen’s behaviour by implementing Positive Behavioural Support. When Stephen left the family to go to School his behaviour deteriorated and he was sent to a hospital, which has now become his permanent home.”

Stephen’s mum, Leo wants him back home. He is currently stays at a Psychiatric Ward 24/7. He is not getting the support and affection that he needs- both of which his parents are able to provide. Leo is campaigning to bring Stephen home. Help her by signing her petition HERE

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

Autism LinkFest

Autism: How new therapies are helping people with ASC – find out newly developed therapies that may help people with the condition. Be aware that not all of these therapies have been evaluated!

Food, clothes, transport, beds and ovens: the aid schools are giving UK pupils – poverty is everywhere. Schools find it difficult to ignore the signs of poverty in students, and are doing the best they can to help.

Girls and Autism – How does Autism affect girls and what can be done about it?

Preparing for Halloween – how can we prepare people with Autism for halloween?

I am not Kelli Stapleson – a brilliant piece written by a mom with unconditional love for her child

What can be done for adults with Autism? – there are not a lot of studies, provisions or help available for grown ups with Autism. The system seems to forget that kids with Autism grow up to be adults with Autism. What can be done?

Kelli Stapleton: the mum who tried to kill her daughter who has Autism

Is it right for people to assume that attempted murder is alright just because the victim has Autism? Of course not! Read more HERE

Genetic Imprinting Theory, Autism, Schizophrenia and Bad Reporting

Let us take a closer look at how news reporters use words to manipulate the meaning of scientific research. I’m going to use the recently published article by Byars, Stearns and Boonsma (2014) on the opposite risk patterns for autism and schizophrenia and its association with birth size.

Here is the link for the original study: royalsocietypublishing

Here is  The Independent’s take on it: independent.co.uk

and here is ABC’s take on it: abc.net

Which one reported it better? Which one would you be more inclined to read? Why?

Lemn Sissay: A Child of the State (MUST WATCH!!)

Can you imagine being 11 years old and being given away by the people you have treated as your own parents?

What was it like to be a ‘child of the state’?

What was it like to not have your own parents (adoptive or not) while you were growing up?

How is it possible  that Lemn Sissay was able to endure all of these and become as successful as he is?

Please watch the most poignant and powerful story ever told on a TED stage.

Quote of the Day

“It is wiser to forgive than to hate“

Bring Stephen Home

Today’s Daily Prompt: Remember those lovely genies who grant wishes? Well, you’re one and you’ve just been emancipated from your restrictive lamp. You can give your three wishes to whomever you want. Who do you give your three wishes to, and why?

#BringStephenHome

My friend Leo Andrade-Martinez has launched a campaign to bring her son, Stephen (19) closer to home. Stephen is currently at a psychiatric ward in St Andrew’s hospital in Northampton which is 80 miles away from his (and Leo’s) home in Islington. Here is Leo’s petition (please click HERE to sign it):

I want my son out of a mental health unit and to be near his family. We have to travel hundreds of miles each weekend to see him and sometimes we only see him for a few minutes; sometimes it’s not even that.

Firstly, Stephen was at Acorn Park Residential School in Norfolk for two years.

Last year in February Acorn Park told us that they could no longer provide care for Stephen resulting in us only having 2 weeks to find Stephen a new placement. There was none to be found in that short period of time.

Therefore Social Services told us that the best place to put my son would be at St. Andrews. We were assured at the time that it was an autism unit. We were also told medications would be stopped along with a special diet, psychological intervention and therapy being put in place.

Needless to say none of this happened.

He was put in a self-harming ward, not an autism specialist unit. It also turns out that they do not have an autism unit for over 14s, so he was placed with drug addicts, alcoholics and god knows who else.  There are no late teens in his ward.

All individuals on the ward are aged over 25 to late 40s; the place gives me the creeps.

Stephen is locked up 24:7. If my son is not having a good day or is unsettled they won’t take him out into the grounds, this is a huge space which Stephen would love. He goes for weeks and months without going outside into the grounds. For the past 15 months he has not been taken out into the community.

His social life is non-existent. If Stephen has a meltdown 4 to 5 people jump on him to restrain him. Sometimes this is up to 5 hours.

We travel for 1.5 to 2 hours depending on traffic and if Stephen is having a bad day they will not bring him downstairs. We either have to go upstairs and sit with him in a crowded office room, with only one parent present as we have our little boy Joshy with us; children are not allowed into the building. What is even worse is that we sometimes travel all the way to visit him, only to be told that we are not allowed a visit.

I know that Stephen is very unhappy there, although the staff appear to be generally friendly and appear to be nice people, I don’t know any of them by name and it’s always a different person on duty, Stephen hates that. I think it is difficult for them as they have no knowledge about autism and because of this can make you feel guilty for your child’s behaviours. My son still talks about Norfolk and asks for his old carers by name one by one, I actually feel the same way about them as they were amazing. It breaks my heart when he says, “mummy, Ste go home with mummy. Ste no here”, that’s how he speaks. He gets very sad as we are about to leave.

So what do we want for Stephen? We want him out of the Mental Health Act. We want him to leave St. Andrews which should not be a problem as they agree that the hospital is not the correct setting and environment for him. We were told back in February that we needed to find Stephen a long term Autism Specialist Residential placement.

However Islington Adult Social Services are not helping and have made no attempt to find a solution.

So a month ago I was extremely upset, why haven’t they tried? A new social worker came out to see us and said that they thought my son should go “one step down the hospital”, whatever that means!  I said no. What is it that they are going to do that St. Andrews could not?

Their answer was to say, “Leo keep an open mind.”

Their broker has found two possible placements, but again nothing has been done about this so far and she has now retired. Tom emailed me to say that the London hospital is going to approach St. Andrews to do an assessment, however I am not convinced. The only good thing is that it’s a London tube ride to that hospital, but still I don’t want Ste to go there.

So now to Living with Autism and their possible placement, it sounds a good place, it sounds it might suit him, but I have reservations because it’s in Lincolnshire which is even further then Norfolk and Northampton.

The good thing about this though is that Islington thinks it’s too far, so far so good, but yet they themselves have no further ideas and of course they told me they don’t want an outsider like Living with Autism to find the placement. I am not sure what to think of that.

We of course want Stephen to be nearer us so that we can visit more often but of more importance is that we want Stephen to have a better quality of life, this is his basic human right. Being in a psychiatric hospital means that he is mostly locked up, he is not allowed out into the wider community and this means that as a young man with severe autism his human rights are not being met, in fact thy are being violated.

I don’t want my son to be in a mental institution. My son and so many other sons and daughters are put way in these horrible places and drugged up, without so much as an offer of  help or therapy. My son is not mentally ill, he is autistic.

So I call on the NHS, Social Services and the Prime Minister to stop this horrible situation that we all find ourselves in. I don’t want to see another parent suffering like me, not being able to see my son when we visit.

We also call for Section 3 of the Mental Health Act to be changed so as to give autistic people more freedom and not to be treated as mentally ill.

So to conclude, what do we feel we want for Stephen? We want a placement in a rural area with a country feel to it, like Hertfordshire or London Barnet Potters Bar, but this is no easy task.

Ideally we want the placement to be within 35 to 40 miles, so that we as a family can be close to him and see him more often. We are not asking for much.

Please help my family but most of all help my son.

Leo

If I were to become a genie, I would grant my friend Leo’s wish straight away. You can also do so by signing her petition and spreading the word. Please click HERE.

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