Is Charlie racist and rude? Does he need excluding for his behaviour? Or is Charlie struggling in a neurotypical world where he is mis-understood?

I wrote this blog a couple of years ago https://www.smarttalkersblog.com/2019/02/doesnt-listen-is-rude-homophobic-racist.html In many ways this could be Charlie about whom I’m talking. It wasn’t, I hadn’t met him, but I meet hundreds of Charlies a year, and I have done since 1986. Charlie is autistic and a part of him being autistic is that our neurotypical world does not suit him. He appears just like his peers: bright, chatty and able but Charlie is actually from a different culture. In the autistic world, the typical rules of politeness or saying ‘how it is’ do not apply. As part of being a neurotypical adult working with autistic teenagers it is our duty to understand this and to deal with it. 1. Say it as it is: the bluntness of autism If a 14-year-old teenage boy told me I was fat and ugly I might be offended if he was neur0- typical. If he was autistic, I would thank him for pointing it out and realise that he was just telling me the truth. This descriptive bluntness may also apply to people’s obvious ethnic backgrounds or other neurotypical ‘sensitive’ topics. But that's what it is; it's a description, it is not an insult. So, if an autistic teenager calls you a ‘black idiot’ then you could be offended perhaps by the ‘idiot’ but not by the black descriptor, if you are of Afro-Caribbean origin. He doesn’t mean anything derogatory. 2. The wanting to fit in Other autistic teenagers will want to be seen to fit in so may use phrases or sayings that they have heard of the children use. These may be ‘cool’ children, who autistic teenagers would like to emulate . They may want to impress these cool children or indeed other children . However, it does mean they will be using phrases or words they don't necessarily understand and certainly don't understand the full implication of using. Therefore, the consequences of this sort of language used in school should not be the same as for neurotypical children, it is part of reasonable adjustment. A child like Charlie responds well to discussion about such issues . He does not want to offend or to be rude. He does want to fit in. 3. Neural response By the time a neurotypical child is a teenager, we expect them to have control over their emotions and their emotional outbursts in school. However, non neurotypical children cannot be expected to have this same control. It is unrealistic. Professionals must understand the difference between cognitive control and neural response. Neural response is automatic, so children and young people are likely to do things in the heat of the moment without actually being in control of what they do. It’s a typical stress response e.g. the fight as part of fight, flight or freeze. Trauma informed schools are extremely good at understanding the neural response of an autistic child which may lead to seemingly undesirable behaviour. A neural response is the key difficulty of a child with demand avoidance and MUST be seen as an anxiety or panic attack. As with anxiety or panic attacks, the child needs supporting not punishing. 4. Executive function We must know more about executive function as professionals working with ND children and teenagers . When we do, we realise that they may have no filter, so this will be another reason to ‘say what you see’ without the typical ability to think twice before you say anything. This is an issue with the prefrontal cortex so shouldn't be punishable but can be guided when there is a rapport and trust between professional and child. I could go on but I'm short of time this morning however it is imperative that Charlie’s behaviour is understood. His behaviour is communication; he's communicating to us that he's having a hard time. Professionals must, as part of reasonable adjustment find a way of dealing with this and not seeing his responses as illegal, unlawful or punishable. I actually find Charlie to be a completely delightful young man!

The A Word

A guest blog post by Joe James

'Autism – a lifelong, developmental disability that affects how a person communicates and relates to other people and how they experience the world around them' (The National autistic society)

Where do I begin?

Well for a start I completely and utterly disagree with this statement. In fact I disagree with it so strongly that I wrote a letter of complaint to the NAS about how their generalisation of an Autistic individual is not only insulting, but damaging to us. They wrote back (Eventually) apologising but refusing to change it on the grounds that people need it to be classed as a disability so they can claim help from the government and possibly support payments. Where I agree that many people on the spectrum do need additional support, not all do and therefore it should not be classed as a disability. It should be classed as a different ability that comes with its own set of challenges. Life is a challenge for most people if not all people. But we don’t class everyone as being the same ability wise, so why class all Autistics the same? It’s just wrong in my opinion. We should be given the rights as a minority within the workplace instead.

This is why it’s bad. Imagine you are going for a job. You have a degree that you worked tirelessly for. It was so hard getting through the educational system because of how you were treated. You fought for your rights to be treated equally and you never gave up. You may not have been particularly social, but you studied and excelled at your subject, which is the only thing that should matter. You are smart, very smart. You know that given the right opportunity you will prove your worth and show your employer that not only can you do the job they require of you, but due to the way you can hyper focus and micro analyse, you will most likely do the job better than the average person. You do well in your interview. It was a little awkward at times (or it was in your head) but overall the interviewer was smiling and seemed pleased with your credentials and knowledge about the potential job. You masked brilliantly and though it was difficult, you did a great job. You go home full of hope and eagerly anticipating a phone call to confirm your new employment.

After you leave, the interviewer looks again over your resume. She notices that under disabilities you have written N/A (non applicable) she then looks under your set of skills. You have written Autistic, then listed all the reasons why that is a skill. She then googles the words, What is Autism? She is directed to the NAS website with the above statement staring her blankly in the face. This is a stumbling point for her. She thinks that perhaps you have made a mistake. She feels for you but knows that hiring a disabled person comes with issues. It shouldn’t, but realistically it does. She already has several disabled people working for her. She then looks through other resumes and decides to go with someone else. She really liked you, but autism is complicated and she doesn’t need that right now. She is torn up about it, but that doesn’t help you.

This is the reality of the situation that many autistic adults find themselves in. They are genuinely worried about telling a potential employer that they are Autistic. This is so wrong, they should be excited at the thought of having someone in their ranks that can think outside the box. A brilliant problem solver or a vigilant eye for details that others miss. It would be an asset to have someone with a brain like Einstein, Darwin, Jobs, Newton and Tesla. But no, we are ALL disabled and are defined by our communication skills, not our amazing brains and extraordinary abilities.

This is how I think now, but like many people, 7 years ago I didn’t know or care about autism. To me it was kids sitting in a room, having crazy temper tantrums and smashing things. It was weird people that couldn’t look you in the eye and moved around strangely. It was non verbal children that couldn’t tell their parents they loved them. I felt sorry for them, I felt even more sorry for their parents. I couldn’t see past what the medical profession and the media portrayed. I was convinced that autism was a disorder or disability and no one would change my mind. How narrow minded and wrong I was.

6 years ago things changed. My wife and I were watching a TV show. There was a little boy and he was being diagnosed with Aspergers. The show was all about whether a child was born with difficulties or whether it was down to their upbringing. In was obvious to me that the child was born like this and it turned out to be the case. Sylvia pointed out during the show that the boy was just like me. I have told Sylvia many stories of my troubled childhood and the difficulties I had making and keeping friends. She had lived with me and known me since I was 18 and we had struggled socially due to my outspoken behaviour and honest evaluation of people. I am highly intelligent and had always put my problems down to this fact. I had never thought that I was disabled. I likened myself to Sherlock Holmes or Gregory House and sometimes Sheldon Cooper. These fictional characters where all highly intelligent people who struggled socially and their struggles resonated with me. I looked at Sylvia like she had insulted me. “I don’t have Aspergers” I said. “Well rewind it and watch it again, listen to the kid described his life and his friendships at school. Watch him play with his Lego and monologue about why he likes it. That’s what you do when you are obsessed with something” she said. I rolled my eyes, but played along with her silly nonsense. I watched carefully and with a new perspective and what I saw changed my life forever. She was right, that little boy was me. It was suddenly like watching a movie about myself, but he had nice parents. Tears welled up in my eyes and memories flooded back of terrible days at school and being ostracized and bullied. Kids not wanting to play with me and friends betraying me to be popular. It was like a light had been switched on in my head and my whole life suddenly made sense. All this time, all those struggles and confusion. Why I never fit in, why I lost my temper so easily some times, why people didn’t understand where I was coming from and why I was so obsessed with things that I became interested in. Of course I saw it as a negative, but also as a relief. I finally could explain to People why I acted the way I did. There was something wrong with me, it wasn’t my fault.

Months later I was diagnosed officially and started telling everyone I knew that I had Aspergers and that is why I was so annoying. They said things like “I always knew there was something wrong with you" or “I don’t think you do have it, as you can talk fine”. “You don’t look disabled” was my least favourite. But I just accepted this and almost apologised for being broken. I, like many other Autistics, saw it as something that I had, like a disease or condition. At one point when I was studying Autism I had an identity crises, where I couldn’t separate my autism from myself. I didn’t know what part of me was my autism and what part was Joe. How could something that I have, be so entangled and embedded to who I was. I went through a stage when I just said “I’m not going to be Autistic anymore” like it was something I could leave by the door when I went out. I denied it and I hated it. I saw it as the cause of all my problems and the reason I had no friends. For years I struggled to come to terms with this thing that lived inside me. Making me angry, anxious, depressed, aggressive, over sensitive and easily distracted. I could only see the bad and eventually in 2018 my mental health collapsed and I regressed into full blown depression. I had made a mistake at work and blamed my autism, my work blamed it and I was determined to push it away at all costs. The more I fought it, the more I hated myself. I changed so much about myself that year, many didn’t even recognize the person I had become. I lost allot of weight and looked the best I had ever looked. I worked so hard and my boss was so impressed with me. I really worked on my temper and was so much more relaxed and easy going. I took up photography to help me keep balanced. It seemed to help me keep calm and did make me very happy. But alas, my Autism was still there and still affecting friendships. I wanted to tear it out of my head, I hated autism and that was where I was going wrong. In early 2019 I was seeking professional help through Time to talk. I had called the number but wasn’t even able to leave a message as the in box was full. It seems there are a lot of people needing help and I was just one of them. I continued with my photography and even started posting on Facebook. In 2018 I posted on Instagram, but this only made me upset as I judged every photo by how many likes it got. I became obsessed with it and would often not be able to focus on other things at home because I was constantly checking and refreshing the app. I was hyper focusing on this social and public scrutiny of my work and it made things so much worse. But Facebook (for me) was different. I posted on an amateur photographer group and my first photo was a success. So I posted another and another and before I knew it I was again apologising for being autistic and saying sorry for posting so many photos. That’s when something strange happened. People in the group were nice to me and said they loved my photos. It was then suggested that I post on Memories of Horsham, so I did. They also loved it and I explained I am autistic, so they would be ok with me posting lots of photos. This was hard for me, but things often are, so I just went for it. Of course I received some criticism, but overall the comments were very positive. It was then suggested that I start my own Facebook page so people could see all my photos. I started using the platform to talk about being autistic and all of a sudden I was giving people advice and hope for the future. Just by being me, I helped people. I stopped saying a “had" autism and embraced it as being part of me and not something I have to live with. I saw how being autistic was the reason I could take amazing photos and had learned how to do it so quickly. I was focusing on all the good things being autistic gave to me. Like hyper sensory issues. They were not issues when I was in the countryside surrounded by nature and beauty. They enhanced my experience of the world around me and I could share and explain this to others. I started a group called positively autistic and encouraged others to see the good side of autism. I fought my corner against negative people, stuck in their ways and hoped one day they would see what I saw and loved themselves, autistic brain and all. Because I accepted myself and embraced being autistic, my mental health was manageable and most of the time in a good place.

Being autistic is not a label for me. It is not a definition or a statement. It is who I am and the minority I am part of. It is my tribe, my people and in many cases my friends. It is an enhancement but also a struggle. It is badly underestimated and treated like a disease. It is wrongly depicted and unfairly defined by the medical profession. It is stereotyped and mocked by the media and it is shamefully misunderstood and mistreated within the educational system. It is looked upon as something that is wrong with me and rarely thought of as a benefit to the human race. But without us this world would be a very different and far worse off place. It is not the Autistic people that wage wars over land and greed and power. We are the scientists, the inventors, the experts, the artists, the computer programmers, the musicians and the puzzle solvers. We are the world changers and yet the world won’t change for us. With this in mind, I fully encourage those of you who agree with me, to write your own email to the NAS and demand they change their definition of what we are, considering we never gave our consent to this misrepresentation, because we were never asked or consulted. The only people that can define Autism is autistic people. That is our right, but we have been robbed of it.

My final thought is this. Many autistic people are trapped. Trapped inside their exceptional minds, unable to communicate, unable to function without assistance. They are lost and it pains me to be so helpless and unable to find them. But so many, in fact the majority of us are not lost, we are just very alone and if you can, please guide us. Sylvia was and still is my lighthouse. She guides me everyday to the safety of the shore. Sherlock needed Watson and House needed Wilson. Every Neuro diverse person needs a Neuro typical by their side. But every Neuro typical benefits from an autistic person who has reached their potential. It’s a symbiotic relationship between people who are very different but deep down, just the same. Be kind and love yourself. Being autistic is who we are, embrace it and you will be free to become the person you were destined to be.

Thank you for your time. 

Joe James

https://www.facebook.com/JoeJamesNeurodiversityawareness/

Toddler not talking?

When we're called in to see  toddler who isn't talking, many parents are surprised that we don't start to work on getting them to say words . We have talked before about there being a pyramid of priority, as below

However, for some children, about whom we may be concerned about social interaction, we will suggest a different approach. As Hanen licensed therapists we might have these 5 top goals:

1. For the child to enjoy social interaction
2. To understand and use non-verbal communication (especially gestures)
3. To pay attention to people’s faces and words
4. To help the child imitate
5. To respond to bids for Joint Attention (RJA)

These can all be done through play.

Act together for Autism

Today, The National Autistic Society (NAS) have launched an online campaigns guide to help implement theAutism Act 2009 in England.

The publication of Act Together: a step-by-step guide to getting the most out of the Autism Act coincides with World Autism Awareness Day, and provides campaigners with the information they need to improve services for adults with autism.

The Autism Act 2009 was a landmark piece of legislation. It was the first ever disability-specific law and led to the production of two important documents: the adult autism strategy for England, and statutory guidance for local authorities and the NHS.

Since the publication of the strategy and statutory guidance some authorities – particularly those with a long-standing history of working with people with autism – have taken great strides in improving planning, services and outcomes for people with autism. Others, however, have a long way to go.

Act Together is an eight-step guide will provide you with all you need to know to campaign locally to implement the strategy and statutory guidance, provide helpful hints when you get stuck and highlight the good work that is already taking place. It covers:

1. The knowledge 
2. Understand what needs to be done first
3. Choose your target
4. What is going on in your area?
5. Take the campaign to the top
6. Involve yourself
7. Keep up the pressure
8. Start again!

At the moment the guide is an online resource, but we will be producing a number of printed copies. If you would like a printed copy when they are available, please email

Visit the Act Together website at www.autism.org.uk/act-together

Autistic? They're all like rainman aren't they?

'People ask if my son is like rain man, or claim  that as they met one other autistic person who happened to like them they suddenly have a good way with all of them, its like saying " Oh one of my friends is chinese/white/black therefore all people of that race like me" 


I read the above with horror recently on 'A problem shared is a problem solved' Face book page where parents can share their own tales of ignorance and  stupidity or seek another parent's perspective https://www.facebook.com/groups/169134469812447/ my comment in response was my favourite saying, 'When you've met one person with ASD.... you have met one person withASD'.  


The Give Austism a chance campaign will hopefully spread the word to help educate the general public, have a look at their video:








The message is plain and simple..... just because someone has ASD does not mean they conform to a stereotype any more than all Englishman are the same or all women are the same!


We are quite unique at Small Talk due to our experience of working with children with ASD, we have one highly specialist SLT and two specialist SLTs.  www.private-speech-therapy.co.uk

What treatments are available for ASD? Positive approaches and interventions

In these days of 'I'll just google it....' we can all access a wealth of information and advice. However, as with anything you come across, the information must be viewed with a  great deal of caution. This is especially true with anything that involves children and particularly pertinent when it comes to ASD. If a parent has just received a diagnosis or maybe just suspects that their child may not be developing language or social skills as they should, the desire to search the web for information is compelling. There are two points I would like to make: 1. There is a dearth of utter rubbish about ASD and intervention and 2. The quote I really like is 'when you have met one person with autism....... you have met one person with autism'. This means that one size does not fit all in the world of ASD therapy/approaches.

With this in mind, I was delighted to read the Options Group's latest newsletter in which their expert Geoff Evans gives an overview of some of the more reliable ones. I have permission to show it here:

A quick search of the internet will produce a vast array of approaches and interventions many of them promising to almost work miracles. Deciding whether to use an approach or which will be most appropriate can be very difficult. It is important to consider the impacts on the individual with autism as it may cause high levels of anxiety and stress.

In this article I present a few thoughts for your consideration and references to more detailed information.

Inclusion of any specific approach does not mean that either I or Options Group approves of it but it is included to represent the variety of approaches available to parents and professionals.

I have placed approaches and interventions under a number of loose headings, these include:

Approaches and Intervention

Behaviour based

ABA (Applied Behaviour Analysis)

This approach uses observation and measurement of behaviour to understand individual’s behaviour and how they learn. This is used to promote learning and development. Information can be found atwww.iaba.com.

TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children)

This provides a framework for understanding autism and enabling independence through its emphasis upon structured teaching. For further information on this approach refer to www.autism.org/teacch.

Interaction based approaches

There are a number of approaches that are based around interaction. In general terms they include, in their aims, creating an enjoyable none threatening communication environment in which individuals learn to accept the presence of others and share personal space, pay attention, take turns in communication and begin to use and appreciate the benefits of communication. One of the key features of these approaches is that they take their lead from the individual with autism.

As an introduction the following books and articles may be of interest,

"Finding you finding me, using interaction to get in touch with people with severe disabilities combined with autistic spectrum disorders" by Phoebe Caldwell.

"A practical guide to intensive interaction" by Melanie Nind and David Hewitt

"A good introduction to the floor time which is a developmental interaction approach developed" by Stanely Greenspan, which can be found at http://wwwpolyxo.com/floortime/buildingplaypartners .html

Sensory based

Whilst there are a number of approaches that are predominately about understanding and meeting sensory differences, many approaches such as TEACCH and SPELL have recognition of the importance of meeting sensory needs and integrating them within their framework.

Sensory Perception Issues in Autism by Olga Bogdashina is a great reference point which looks into the sensory and autism world.

Another informative book is "Living Sensationally" by Winni Dunn. This is not autism specific but provides good understanding of the senses.

Whilst these books do not advocate a specific approach they provide a good starting place for further research.

Communication based

Many approaches and interventions in autism are based around meeting the communication needs of individuals with autism. These include well established approaches such as PECS (www.pecs.pecs.org.uk). For further information on communication and autism based approaches visit www.icommunicatetherapy.com.

The aid of visual supports which are used to communicate is widely accepted. A great information source can be found on the NAS website in the living with autism section, www.autism.org.

IT based

Framework Approaches

Many organisations including Options Group work to a framework approach rather than implementing a single approach. Implementing such an approach allows us to respond to uniqueness and individual needs and requirements. Furthermore utilising such an approach will assist in responding to innovation. The NAS - SPELL framework is a widely recognised approach,

Structure

Positive approaches and expectations

Empathy

Low arousal

Links

SPELL can be easily adapted to suit various provisions, for homes, schools or even residential provisions. When looking at any intervention or approach it is important to look at the values underpinning it. As a minimum I believe they should include recognising individuality, a commitment to working with the person with autism, based on honesty, integrity, equality, openness and underpinned by sound independent evaluation and research.

Final thoughts

My personal view of what contributes to successful approaches and interventions

(1) Centralise the individual with autism and actively engage them in decisions. This often means putting extra effort into understanding their perspective and wishes, particularly with those who struggle to make their own decisions. Within the SPELL approach this is addressed through the empathy component.

(2) The approach enables you to get a wider understanding of autism through various perspectives. This understanding is based upon current research whenever possible.

(3) 

Structure is a key component of such approaches as TEACCH. The following website has examples of using structure to address such needs as toilet training and provides a good example of how structure is used. http://www.teacch.com 

(4) Emphasis upon the individual’s preferred form of communication needs. There is a variety of communication support available to parents and professionals, for example Picture Exchange Communication Systems (PECS) and a number of symbols based products.

As mentioned above, recently a number of IT based systems have become widely available. A good example of this is touch phones and easy downloadable apps. If considering this type of communication support it is well worth considering the different ranges of apps available. Organisations such as Autism and Computing at http://www.autismandcomputing.org.uk/about.en,htmlcan offer useful advice not only about technology and communication but also about their use in terms of structure and other benefits.

(5) Be very clear about what you want from the intervention or approach.

We would all like an approach that solved all the difficulties we are facing or provides solutions to all social, communication, interactions and learning challenges experienced by individuals with autism. However no single approach can do this therefore it is important to identify and prioritise what we want the approach or intervention to address. Simply making a list of what you want from the approach and matching this against what the approach offers can be worth the time spent.

(6) Being clear about what the approach is able to offer and if it is capable of doing what is stated.

Significant and more permanent changes and improvements are often only achieved through hard work over time. Personally, I am always sceptical about approaches that claim too much and particularly to achieve it quickly. A good source of information on intervention, treatments and therapies for autism and current research around this area can be found on the Research Autism site which is provided by an independent charity (www.researchautism.net).

(7) Being clear about the downside of the intervention or approach.

Some of the common downsides of intervention and approaches can include,

• Having to invest large amounts of time in implementing the intervention. This may not be possible with all the other demands upon you or your organisation. The same is also true of other resources such as equipment.
• The positive impact being outweighed by the negative not for the individual with autism but for the whole family or organisation.

(8) Addresses the need for meaningful and leisure physical activity.

This is more of a personal approach, however I prefer to see individuals with autism in a holistic way and recognise the importance of engaging the whole person. For example, providing for leisure and recreation as well as addressing common areas of need such as communication etc.

In conclusion

There are a variety of interventions and approaches that will enrich the lives of individuals with autism and their families however they should be approached with a degree of healthy scepticism and acceptance. In order to be effective we are required to do the basics in terms of consistency and structure.

To subscribe to their newsletter so you can regularly read Geoff's advice and about the Options group work www.optionsgroup.co.uk

Transitions: hard for us all but worse if you have ASD

As our children look forwards to heading back to school, many of them are facing transitions. May be they're starting school, maybe they're moving to secondary school or just to a new Teacher. It is stressful for all children but imagine what its like for a child with ASD.
The latest ASD information bulletin from the Options Group came through today. They are always worth reading.The latest article by Geoff Evans, Head of Quality Improvement at Options Group is about transitions. When he interviewed parents and professionals about their concerns about behaviour they all reported that transition was a real problem. This could be at the finish of an activity or at the start  of a new one in class, at home it could be moving from one part of the house to another. So imagine what it's like for bigger transitions such as moving class, moving school etc.

He urges that we look at the problem from the child's point of view and offers a check-list to make sure we're understanding the difficulty and doing our best to help. It's an interesting article and there's a catelogue of previous articles you can access, all about ASD and all from a practical, very experienced standpoint.

If you know anyone who would like to receive autism information  from the Options Group, e-mail info@optionsgroup.co.uk stating 'opt in' as the subject.

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