Telling a child about being autistic

The following question was posed to me in the ‘Ask the Experts’ section of AuKids magazine ( in their Spring edition, 2014:

‘How and when would you recommend I tell my child about their diagnosis? I am nervous about discussing it.’

This was my response (with some additions):

As is so often the case in the autism world there is no simple ‘one size fits all’ answer to this issue – and yet it is such an important one! I tend to suggest that there are three aspects that need consideration which will help decide the ‘when’ of broaching the subject, and these are:


  1. intellectual ability
  2. cognitive and communicative ability
  3. motivation


Simply, unless the individual has sufficient skills in the first two and a certain level in the third, it is unlikely that any discussion will be beneficial. However, with the right mix of these three, I would think that you are good to go.


It is always a good idea to think long term – so, from the earliest possible age, start to identify concepts such as ‘difference’ – this can be a daily game and should always be based on the philosophy that a) yes, the world is full of difference, but b) being different is not a bad thing. One such game (and use your imaginations to create others) is what I like to call the bowl of fruit game. Have your pre-prepared bowl full of oranges, with the one solitary apple. Questions – are there loads more oranges than apples? [Yes]. Do you like apples? [Yes]. Are apples different to oranges? [Yes]. Does this make apples any less worthy? [No]. does the fact that apples fit different ‘criteria (colour, taste, etc.) make them somehow inferior? [No]. These sorts of questions/games can develop a child’s conceptual understanding of difference, and how difference does not mean anything negative.  In a similar vein, diversity and individuality can be notions that are developed in a simple, but positive manner. Then, when it is crunch time, the individual should have an array of ideas and terms than are actually applicable, as opposed to a confusing new set of communications that may muddy the waters.


The individual may also ‘tell’ you when s/he is ready. Questions such as ‘why can’t I do that as well as her?’, or any questions relating to difference are indicators that the individual may well benefit from having a better understanding of self.


I am beginning to reject the term ‘diagnosis’ – one gets diagnosed when there is something wrong with you in medical terms, and this should perhaps not be applied to autism. I far prefer the term ‘identification’ and the connotations with ‘identity’ – to discover that one has a new identity that explains so much can be a wonderful thing – as opposed to the doom and gloom so often associated with a diagnosis. So, please be careful how you choose the terms you use, as the longer term impact can be considerable. If it is feasible bring the individual’s interest into the equation – there are many famous real life and fictional autistic people that you can refer to if applicable. What is also crucial is to ensure the individual understands that just because they are autistic it does not mean s/he will be the same as others with the same identification – there may well be some similarities, but everyone’s strengths and weaknesses are their own. It’s important to make this clear to avoid potential issues with poor self esteem.


As much as possible make the news positive – this is an explanation of who a person is, not a dire foreboding of dreadful times to come! I like the Tony Attwood style of ‘congratulations’ when it comes to understanding one is autistic. However, do also be honest, as the individual is likely to store what has been said and revisit it often. Make the person feel exactly as they should – i.e. as a wonderful, interesting, different to the majority, unique person who has a fantastically interesting brain, and whose future could be anything they choose. Being autistic does not preclude anything at all, apart from not being autistic!

Article in Yorkshire Post

I have been asked by SHU to provide the article published in yesterday’s Yorkshire Post, so here it is (horrible feelings of hubris but I promise it’s only because I was told to):

Decades ago I found myself supporting a young woman with autism. I had done my reading of the autism texts of the time, and was singularly surprised when nothing I had read matched up to the person I was sat next to. There was no flapping, she had no interest in my earrings or buttons; she wasn’t even lining anything up!

For us at The Autism Centre one of the key messages we are trying to promote is that a medical (textbook) view of autism is often not an appropriate one.

The concept that all people with autism are disordered, impaired, or somehow ‘lesser’ is one that needs to be challenged. Having worked closely with people with autism for more than 20 years, I have had the pleasure of meeting many hugely intelligent, insightful, kind, caring, loyal, skilled autistic individuals, including two of my Doctoral students who both graduated successfully and are now prominent in their respective fields.

Some of the strongest marriages I have encountered are between people with autism, and I have also met multi-millionaire entrepreneurs who have been identified as autistic.

So, the question remains, why is it that autism continues to be seen as a disorder, with terms such as ‘impaired functioning’ still so rife within the literature and current diagnostic manuals? Why is it that one needs to present as a ‘problem’ before being in a position to be identified as autistic? Even the term ‘diagnosis’ brings along its own associations with ‘illness’ or ‘disease’. Surely, this gives out the wrong message to all involved – parents, individuals, and the public? For years I have been suggesting that the term ‘identification’ is a more appropriate one, decreasing the pejorative language so often heard in reference to autism.

Without doubt being autistic in a world populated in the main by people who are not can cause huge issues for the individual and their family. But this is not the same as suggesting that the problems are caused by being autistic. The very fact that there are plenty of autistic individuals who are hugely successful demonstrates that being autistic does not preclude anything at all.

The sad fact is that there are still pockets of thought that deny this; comments such as ‘she will never be able to have children’, ‘he will never go to University’ and the like are still way too prevalent. Parents of newly identified children are still sometimes told what the future will hold, despite the fact that no one has a crystal ball. Perhaps many of the problems stem from being in a poorly understood minority group, rather than directly from being autistic?

Nonetheless, things are certainly changing for the better – however slowly. The National Autistic Society (NAS), for example, actively promotes employment for people with autism – and, at last, Higher Education is beginning to recognise the value of having autistic students researching into areas relating to autism. The Equality and Human Rights Commission is working to ensure a level playing field in the workplace, although there is some way to go before this is fully realised.


The Autism Centre at Sheffield Hallam University is working to further these initial advances; to continue to promote a more accepting view of autism and to encourage society to recognise the potential of autistic individuals.

One of the courses we run in collaboration with the NAS has welcomed a plethora of autistic speakers, guest lecturers and autistic students each year since its launch. The insight and expertise from such individuals is invaluable, providing richness and value to the course. Indeed, it would be foolish not to acknowledge that without the input from autistic individuals on the course, students and lecturers alike, it would be highly unlikely that the qualification would be such a huge success.

So, have perceptions changed over the years? Well, for absolute certain I can say that mine have. I no longer assume that all publications are ‘correct’, and recognise that all autistic people are individuals. I have learnt to challenge the notion of impairment and disorder, while still recognising the huge challenges faced by individuals and families. I have begun to recognise the damage that can be done by ignorance and misinformation. I have learnt that changing perceptions through a better understanding of autism can significantly improve lives, and the best way to develop an understanding of autism is to listen to those who are autistic, their families and friends. In terms of general perception – well, certainly society is moving slowly in the right direction, with more and more autistic people self-advocating and promoting their strengths; however, I believe there is an awful long way to go.


Dr Luke Beardon is a member of staff in The Autism Centre at Sheffield Hallam University. He has been working as a practitioner providing support and consultancy in the field of autism and Asperger syndrome for around 20 years. Luke has been nominated for a National Autistic Society Lifetime Achievement Award at the Autism Professionals Awards, to be held in Harrogate on March 3.




‘Good’ behaviour at school – not so good at home?

Note – this is not applicable to all individuals with autism, nor all schools!!!

Regarding autism and whether it is possible for children to display different behaviours at home compared to school – this is something that over the years probably hundreds of parents have asked me about. So often the message is a similar (and familiar) one – that at school the child ‘behaves’ well, while at home things can get…well, kinda out of hand! This results in huge frustration for parents who cannot seem to get school to accept that behaviour at home is so different to that at school, with school insisting that ‘everything must be ok’ [NB I am not suggesting that all schools respond in this way, many will be highly supportive of the family).


It is very clearly documented (by parents and professionals, as well as organisations such as the NAS) that many children with autism (though not all) will display considerably different behaviours in different settings. This can be as a result of a wide range of reasons, from central coherence abilities, to environmental factors, to differing levels of stress in different situations. A reasonably common pattern in terms of school/home behaviour is that the child may appear to present with no problems at school, but at home there can be major issues in terms of behaviour. Often, the result is that either school simply do not believe that the child they see at school can be displaying the reported behaviours at home, or that school erroneously believe that because the behaviours are only seen at home then the causing factors for the behaviour must also be situated there. This is not always the case, and it is of imperative importance that all parties involved recognise the serious nature of high levels of distress, and recognise that all aspects of the individual’s life may be a contributory factor towards high arousal – which, in turn, may manifest in behavioural issues. This can lead well into adulthood – for example I know several people whose behaviour at work appears to demonstrate no problem at all, whereas the reality is that they are in high states of anxiety and stress, to the point of self injury at home, and, in some cases, anxiety and depression. This demonstrates just how important it is that all concerned recognise this reasonably common autism related pattern as early as possible, in order to support the child (or adult) well. Just because a child has the ability to ‘mask’ their autism at school does not mean that they are not greatly impacted by their autism on a daily basis. In fact, it is often this ‘masking’ behaviour (acting, or copying other children) that lead school to believe that there is no problem at school; however, it may be that the child is behaving in this way precisely because they are stressed and have discovered that by copying others they can ‘hide’ their very real problems. When at home, all of the emotional distress may then be released in what is seen as a safe environment. The irony is that in some cases, it is the stress and anxiety experienced at school that subsequently lead to the copying behaviour and subsequent meltdowns at home!

Good at homework – not so good at exams?

Differences between exams and homework from an autism perspective


Some autistic students will demonstrate a good academic standard when completing homework, and yet perform less well when faced with exams. This is clearly not the case for all students, but it is essential that there is an understanding within educational establishments that there may be good reasons behind the disparities so that measures can be taken to ensure that the student is not unfairly discriminated against during exam times. Under the Equality Act students are ‘allowed’ ‘reasonable adjustments’ so that they do not face unlawful discrimination as a result of being autistic, so an understanding of how an autistic student might engage with exams is essential; both so that the student can be given the opportunities to meet their potential, and that a school does not act unlawfully.

Key Differences

Key differences between abilities to engage successfully with homework compared to examinations include:

  • Familiar environment
  • Choice
  • Time

Familiar environment

Autistic students can be hugely affected by their environments. It is very likely that there will be a direct correlation between levels of arousal (emotional, sensory, anxiety, etc.) and ability to perform cognitively, so it is vital for all autistic students to be as calm as possible in exam conditions in order for them to perform to their best abilities. Homework (as the name implies) is usually undertaken at home, where the individual is able to identify and access an area in which they are most comfortable to engage in intellectual pursuits. This might be in a very quiet area on their own, or under the covers in bed – each student will likely have their own, preferred, location in which they feel most comfortable. This option is unlikely to be afforded them during exams, which may be a considerable factor to take into account when considering potential disparities between achievement at exams compared to performances with homework.


At home all sorts of choices are likely to be available to the student which is not usually the case for exams. Of particular note, the learning style of the student is likely to be more adhered to at home (often with support from a parent) which is not something that most exams take into account. It is important to note that support around learning styles is not a case of a parent ‘doing it for them’, but rather a parent who has a good understanding of the communication and learning style of the student being able to interpret tasks and present them in an ‘autism friendly’ manner. This ‘translation’ between the predominant neurotype (PNT) modus operandi and the autism cognitive style can make all the difference between a student understanding what is needed, compared to misunderstanding of tasks and wasted energies going in to providing work unrelated to what is required.

In addition to the sorts of support provided by a ‘mentor’ the student will have more choice available to them at home related to their own autism preferences. These are individual to each student and can cover a wide range of aspects of learning – everything from choosing their preferred sensory environment through to ascertaining how long is required to process information.


One of the most critical aspects of homework that works in the favour of the autistic student compared to exams is the duration they have in which to complete. Many autistic students have slow processing time, which means that longer is required for them to complete tasks relative to their PNT peers. Without limitations on time the pressure under which the student works is considerably reduced, which allows the student a better chance of optimising their cognitive capabilities. It may be that the autistic student requires much more time to process information and formulate responses than their peers, and it is often the case that because this occurs ‘behind closed doors’ that schools may not appreciate just how long certain tasks can take. Of course, students will be set tasks at school, which can give teaching staff an indicator of how long the student might require; nonetheless, the time ‘allowed’ for homework compared to exams can be a poignant factor in understanding why a student may fare well in homework tasks and yet not achieve similar results come exam time.


Factors to consider during exams

  • Ambiguity of questions
  • Writing skills
  • Monotropic style

Ambiguity of questions

Many autistic students will process language accurately (or literally). If a question is not absolutely clear, or if there are ambiguities, then there is an increased risk of the student answering the question in an incorrect manner. It is important, therefore, to, make sure that the student has a fair opportunity to ascertain the meaning of the questions and what is required of them in terms of answers.

Writing Skills

Many autistic students find handwriting extremely problematic. If this is the case then it is often opportune to provide the student with an alternative form of response. Most obvious is the use of a laptop or computer; some may prefer a scribe, or even in some cases verbal responses might be considered, followed by a transcription of the recorded responses.

Monotropic Style

If a student has a monotropic (single channelled) processing style then exams will likely be far more demanding for the student than if they were adept at multi-channelling. Moving from one mode of processing to another is likely to take a considerably lengthier time for the monotropic student; this can include moving from one task to the next, or moving from reading an exam paper to responding on a computer. In order to reduce risk of discrimination, it is highly advisable for the educational system to take this into account when examining students.

Possible Solutions

The following are possible solutions to some of the issues raised:

  • Educational ‘mentor’
  • Environmental adaptations
  • Temporal adjustments

Educational ‘mentor’

If required, it may be beneficial to have an educational mentor for autistic students. The role would categorically not be to assist the student in any way that would favour them in subject specific academia; rather, it would be to reduce issues raised by the individual’s autism to reduce risk of discrimination. The mentor may be in a position to ascertain whether the student has understood the questions posed, for example.

Environmental adaptations

These may include allowing the use of headphones to block out noises, allowing the student to take exams in an environment of their choosing (there are examples of students taking exams at home under invigilation, for example), or taking the exam in a room on their own.

Temporal adjustments

It may be highly beneficial for the student to be allowed extended time to take their exam. This might include time for breaks, as well as more time to allow for processing of information and formulation of responses. Many students simply cannot process information at the same speed as their peers; this has nothing to do with their academic knowledge, which may be sound, so to disallow the opportunity to engage with the exam in a manner that suits them in terms of processing time would be highly disadvantageous.

Hello – and explaination of what I am doing

I decided to set up a Blog (short for Web Log don’t you know!) to give those who are (possibly) interested in some of my views on autism and autism related topics. I am not representing SHU views (necessarily) – I am writing from my own experience and from sharing experiences individuals and families have shared with me. I am not a clinician, but do have decades of experience – personally and professionally – which I hope allows me to have some opinions that could be useful. If anyone wanted specific topics given an airing, do feel free to email me with suggestions: