Different is not less, it is different 

There are a number of areas where autistic people interpret or experience things differently to neurotypical people and where we often get told we are doing something ‘wrong’. Our approach to something like non-verbal communication indicates to some that we are in need of some sort of ‘fix.’ I would suggest that no ‘fixing’ is required, just more understanding of and respect for the validity of different perspectives.

This post examines four areas where this issue occurs.

Sensory sensitivities

Autistic people often have something called sensory processing disorder. While this is not exclusive to autistic people, it is very common for us. Sensory processing disorder usually means our senses are significantly heightened. Things can be too loud, too glare-y, too smelly and so forth. The impacts can be extreme. A while back I had breakfast with some Disabled community leadership folks and someone ordered an omelette with black truffles. I really don’t like eating  mushrooms or fungus. The smell of the truffle was so overwhelming and horrific that I had to move several tables down until the offending smelly things were consumed! Sensory issues have resulted in people selling their home or leaving their job.

There is an additional issue with sensory issues: many people are unaware they exist which makes it hard to get any accommodations or understanding. Your senses are your reality, your truth, how you view the world. So when someone comes along and says they are experiencing sensory input as extreme and unpleasant, this can get ignored or misunderstood. 

I think a solution to this one involves people who do not experience sensory issues understanding that others might experience in this area and adjusting their response accordingly. It requires a shift in thinking to understanding that sensory input can be different for each person.

Eye contact

Autistic people generally don’t willingly make eye contact. For many of us eye contact is extremely invasive and unpleasant. Some people feel physical pain when making eye contact. 

In many societies eye contact is seen as essential to good communication. This can result in autistic people being forced to make eye contact so as to supposedly ‘improve’ our communication. This is cruel and unneccesary. In fact eye contact isn’t the universal pinnacle of communication anyway. In some societies it is considered disrespectful to make eye contact but try telling that to some ABA* therapist harassing children to do something which goes against everything they know and causes them distress and pain.

The other issue with forcing eye contact is that it simply doesn’t ‘work’ in terms of building effective communication. I tend to look in the general vicinity of someone’s forehead, simply because it is easier than having people assume I’m being somehow rude because I’m not looking at them. Very occasionally I accidentally stray into looking in their eyes. It is like they can see into my soul and I can see into their soul – not pleasant! And actually not very useful in terms of communication. If I make eye contact my entire attention will be filled with the unpleasant sensation and I won’t be able to take in what is bing communicated.

Eye contact is an area where neurotypical experience is privileged a lot of  the time. Autistics are seen to be ‘doing it wrong’. Rather than assuming we need to do eye contact ‘properly’ in order to communicate it would be much better if autistic experience was understood and respected and people learned that for some of us, not looking does not equal not listening and that this is OK.

Facial expressions and body language 

Autistic people often struggle to understand facial expressions and body language and also things like tone of voice. This does not apply to all of us but it is very common. This is another area where many neurotypical people often seem to assume that everyone understands these things. This means when we miss something – such as someone being sad – that we are viewed as thoughtless and callous. I understand that this may be something which feeds into the myth that autistic people lack empathy.

The meaning of facial expressions and body language can be learned but it is a tricky thing. For example I understand facial expressions in films that I have watched many times over but this doesn’t translate into conversations because it happens too quickly and most people don’t like me staring at them as if they were a movie! 

Once again, some ‘therapies’ teach this to autistic children-  or at least they try to. I was in a conversation with a former ABA therapist (and yes, it was a very interesting conversation!) who told me how they would ‘teach’ autistic kids facial expressions using emojis but for some reason it wasn’t effective! I explained that the reason not wasn’t effective was probably related to the fact that a cartoon or emoji is very different from an actual human face. Despite that, many autistics don’t really understand emojis. I am one of those people. The five or so emojis that Facebook has for responding  to posts are OK and i get the vomit one and the laughing one but aside for that I have no idea what they are meant to represent! Once again this misconception that autistic children can be taught these things using strategies that might be effective for neurotypical children but which demonstrate a total lack of understanding of autistic experience is just not right. These attitudes also feed right into the idea that autistic people are broken, in need of ‘fixing’. unreachable and remote. 

Unwritten rules

In the world there are a bunch of unwritten rules, Neurotypical people often understand these instinctively. I always think it is a magic trick because it is completely  alien to me. I know that there are unwritten rules and I can learn most of them once I know they exist but the amount of social faux pas I have had related too misunderstanding unwritten rules is large! People who instinctively ‘get’ unwritten rules often fail to even realise that their ARE these rules. Even if they do they may not realise that autistic people find them baffling. It is like the sensory issues – people tend to believe that their experience is correct and others’ experiments are either a deviation from correct of that they simply don’t exist.

Conclusion  

All of these considerations and issues seem to come down to a few things which need to happen.

  • Understanding and knowledge of autism and autistic experience
  • Respecting difference an knowing that some people have a different experience
  • Not privileging neurotypical experience as the ‘right way’ of doing things
  • Listening to autistic people.

If this happened I think these issues probably wouldn’t be an issue. 

*ABA (Applied Behaviour Analysis) is a ‘therapy’ for autistic children which focusses on rewards and punishments and has a strong focus on conditioning autistic kids to appear less autistic. ABA is implicated in post-traumatic stress disorder and goes against everything that myself and fellow autistic advocates work towards.

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Strategies for managing uncertainty in these uncertain times

We are living in uncertain times, which is something of an understatement. Autistic people tend to struggle with uncertainty so the present situation is particularly disturbing and upsetting for us.

There is uncertainty around everything. How long are we going to be in shut down / lockdown for? How dangerous is COVID19? Will I contract it? Will those I love and care for contract it? Will I lose my job? Will I be able to find a job? Will the supermarket have enough of the things I need? Will the events I enjoy attending be cancelled? Will I need to self-isolate? If I do, will I be able to manage being in close quarters with family / housemates for two weeks? Will the virus mutate and become even worse? I could go on. 

Autistic people really struggle with this sort of thing but there are some strategies which can help with the uncertainty. Many of these centre around the principles of mindfulness and dialectical behaviour therapy. I could write quite a long post about mindfulness but will aim to keep it brief. Mindfulness practice is all about focusing on the problems in the present time, not worrying about the future and things you cannot change and not dwelling on the past. A mindfulness mindset involves being aware of the problems in the present and dealing with those. It is easy to catastrophise and worry about the worst happening but it isn’t very helpful for your mental health. Another issue is ruminating on the issues and spending all your spare time worrying. If you think about what is happening now and work on addressing the parts of it you can change as much as possible it is a much more helpful approach. Mindfulness also includes meditation practice which can be very helpful but isn’t for everyone. There are a number of mindfulness-based apps available including Smiling Mind (which I use regularly). Here is some information on mindfulness from an autistic perspective – that of my friend and coauthor Dr Emma Goodall: https://mindfulbodyawareness.com/interoception/

Another concept to help with uncertainty is called radical acceptance. Radical acceptance involves focussing on what has happened and accepting that it has happened and then moving forward to address what you can. It is related to mindfulness. It does not mean thinking what has happened is OK. The opposite of radical acceptance involves stewing over the past and being full of regret and shame. For example, you cannot change the fact that COVID19 is widespread and everyone is positionally at risk but you can choose to wash your hands frequently and take other precautions to stop you contracting it or spreading it. Radical acceptance is probably the hardest psychology skill to practice but it is a great way of minimising suffering and stress and to cultivate a sense of power and agency over what is going on in your life. Here is some additional information on radical acceptance: https://www.dbtselfhelp.com/html/radical_acceptance_part_1.html

There are some autistic-specific methods to reduce the impact of uncertainty. Probably the most commonly used is social stories. These are generally used for autistic kids but the premise can be adapted for adults. I would also recommend avoiding watching the news more than once a day in the current situation.

Uncertainly is not my friend and I suspect is not the friend of most other autistic people but it can be mitigated for. Be kind to yourselves in these uncertain times. I hope these strategies are helpful. I find it is hard to offer support and advice in such monumentally scary times but I do know the strategies I have presented help me. Go well and remember this time will pass.

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Standing on the sidelines of history: an Autistic’s views on coronavirus 

I am in a rehabilitation hospital and have been for six weeks. The COVID19 crisis basically started in earnest  at a similar time as I came here. I have been somewhat insulated against the worst of things and feel like I am on the sidelines to history as it lurches from one terror to another. At first it seemed unreal, like a movie that everyone was watching. Then things started to affect us here. Last week one of the doctors gave a stern talk to patients and staff about the impact of the virus. We were urged to wash our hands for as long as it took us to sing happy birthday twice (to yourself or out loud depending on preference). Hand sanitiser turned up in every room. Then visitor numbers were limited and visitors dissuaded from entering the ward – instead patients were told to meet them outside. Today the cafe removed all its chairs and tape was stuck to the floor with lines at 1.5 meter intervals. We can get a coffee but it needs to be take away. Therapeutic groups will be cancelled from next week. 

The news links us to the world but I struggle to watch it. Sometimes I will click on an article on my phone’s news feed and then spend the next hour or five terrified for the future of the world. It is strangely surreal being in a bubble of almost normalcy while people are fighting in supermarkets for toilet paper and canned goods. I haven’t been in a supermarket, haven’t seen empty shelves or aggression since I came here in February. 

I saw an item on the TV news about the virus in Spain. I was horrified to see homeless people who were the only people on the streets with a curfew in place for everyone else. How would they survive with all the cafes and restaurants closed and nobody giving them change? We are indeed living in terrible times. Each country has taken a slightly different approach to addressing the virus. I don’t know which is the most – or least – effective. It is uncharted waters. How long will it go on for? Will someone develop a vaccine or do we just have to keep going until the virus runs its course, with however many deaths that will entail?

There have been a few direct impacts for COVID19 on my life. The first relates to property. I had planned to sell Whimsy Manor shortly after being discharged from the hospital. I just received an email from my agent advising that due to the current situation it will not be advisable – or possible – to put it on the market. The other direct impacts have been my women’s group closing and the cancellation or postponement of several of my speaking gigs. I don’t know how I feel about this. I feel disappointed to miss doling the things I enjoy and feel are worthwhile but then I wouldn’t want to speak at an event where people contracted the virus either.

I see people on social media posting about being in quarantine or self-isolation and I feel distant. I am not in quarantine myself and can only imagine what it must be like. I don’t like the idea of being confined to home for weeks and I can only imagine how it would be for families. For autistic people it would be so disruptive to routines to be quarantined. I’m glad that there are social stories about COVID19 and other resources but it must be so stressful being confined at home. 

I worry about the economy and particularly small businesses. Everything seems to be closed or on reduced hours. People are surely losing their jobs or losing shifts. Then economic impact of COVID19 is horrific both on a grand scale but also for individuals. I think I am safe being a public servant but I have no way of knowing where things will head with the economy. My secure job may become less secure – who knows? I think the ‘who knows’ response is the scary edge of the crisis. We are all uncertain about a large range of things and things which are important to our welfare and sense of safety. As an autistic person I hate uncertainty yet I cannot avoid it and there is nothing I can do to make things less uncertain.

I do feel like I am looking at the crisis from outside at the moment, despite it having some direct impacts on me. Things could get more ‘real’ though. The hospital I am in may need to be repurposed or the clinicians here might need my bed sooner than expected due to pressure on other hospitals. I don’t know. The key issue of this crisis is the many unknown factors. It is scary times. I think it’s important to acknowledge that and to acknowledge that we need one another more than ever. I am relieved that we have the internet as it makes social distancing and self-isolation less traumatic and enables us to connect with one another.   

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Why ABA is not OK

CW: ABA / Applied Behaviour Analysis

ABA or Applied Behaviour Analysis is a ‘treatment’ for autism which is based in a series of rewards and punishments. ABA comes form the premise that autistic experience and expression, such as stimming, is somehow wrong. It is a system of trying to make autistic kids look ‘more neurotypical.’ It can be highly traumatic to kids, leaving them with post-traumatic stress in adolescence and adulthood. ABA goes against everything I believe in as an advocate and proud autistic person. ABA is often recommended to parents of newly-diagnosed kids. It has a large following in the USA but is in other countries too. 

I have immense problems with ABA, as do many other autistic people and some parent allies. To punish a child for behaviours like stimming is horrific. Stimming is an autistic person’s way of self-regulating and self-soothing. It comes naturally to all fo us and is in no way ‘wrong.’ To publish a child for self-regulating is not therapeutic. It is abuse. Parents are often fed the line that ABA will make their child fit in better in the social world. What it actually means is that children learn how to mask in order to pass as neurotypical. Masking is not a positive attribute and means kids end up hating themselves and trying to be something they are not.

The training element of ABA can be likened to training a dog. It is an insult to treat autistic kids like this. Instead of trying to create autistic people who appear to be neurotypical because they have been taught to suppress who they are, why don’t we try to create a society which is respectful and inclusive of autistic people who do not need to mask because they are in fact perfectly OK just as they are?

There are a lot of considerations around ABA for advocates. Many of the ABA ‘therapists’ are young women who want to do something positive with their lives. They genuinely believe that ABA is a positive thing. In my travels I have met a number of these women who have realised how damaging ABA is and quit. I sometimes get friend requests on social media from ABA therapists and it leaves me very conflicted. On the one hand I want nothing to do with them but on the other I wonder if their being exposed to the content on my social media might change their thinking and result in them seeking alternate forms of employment.

Similarly I come across parents who are subjecting their kids to ABA and I don’t know what to do. Usually I have a conversation around my concerns with ABA but it is important not to be blaming I find. These parents may have never been around autistic advocates and have no idea about the Neurodiversity moment or Autistic pride. The clinician who diagnosed their child may well have been the one who recommended ABA. They may have not had any other opinions given them except that ABA will help their child. I know parents whose child was in ABA and who realised that it was damaging so stopped their child attending. I think this is becoming a situation that happens more frequently, however that is not to say that ABA is losing its influence and it is still important to have those conversations with parents.

So what do we do about this?

I think getting the message out to parents is key as they are the ones who initiate and pay for ABA ‘therapy.’ Enlisting parents who have taken their child out of ABA is probably key for this messaging as many parents are not willing or ready to listen to autistic advocates like me who have no kids. The next thing is to change the thinking of clinicians. Clinicians could recommend other strategies which actually support autistic kids and their wellbeing and development. It is also important to change society’s views about autism. If people understand autism as a difference rather than a defect and understood the great gifts that come with it, that would help address the issue.  Things are changing but they need to change more. If instead of societal attitudes driving despair at a child’s diagnosis parents were encouraged to recognise the gifts of autism and saw their child as being different not broken then that would result in less demand for ABA.

I am for therapies which are genuinely helpful and therapeutic, not making autistic kids try to appear somehow less autistic.  I am for support and kindness, not punishing children for hurting nobody and simply being themselves. ABA would not exist in a world where autistic people are valued just as we are. 

If a ;'therapy; for autistcis peopel is based inmakeign su seem 'less autistcis' and be more compliant and 'acceptable' then it is not therapuetci and may actually be abusive.

 

Thoughts on the coronavirus / COVID19 and the autistic community

CW: Coronavirus / COVID19

I saw a post on social media yesterday  saying the COVID19 / coronavirus was a media beat up. I could understand where the poster was coming from as there has been some rather sensational reporting about the crisis but the virus is definitely not a beat-up. COVID19 is a real crisis and people are right to be concerned. I have been thinking about the impact of the virus on the autistic community and will unpack my thoughts here.

Autistic people tend to be more anxious than the general population and it is understandable that we are anxious about the virus. I have been worrying about its impact for a while. I think catastrophising is probably a more appropriate word. It is hard to know how anxious to be. Should I be buying supplies in case I am quarantined? Am I at risk of catching the virus? Are my friends and family at risk? Should I still travel interstate for speaking gigs? Will my speaking gigs be cancelled? Will the economy fail and will I lose my job as a result? I could go on for a while. I think the best advice I have – for others and myself – is to try and just worry about the issues at hand and deal with things on a day to day basis.

Another commentator suggested that COVID19 will be beneficial to autistic employees because it will result in lots of working from home which favours us. Thi is sort of correct but needs to be taken in context. Many jobs do not have capacity for remote working. And autistic people who are not employed are probably less likely to be hired in the current circumstances. As economies shrink, so too does the hiring of people from diverse backgrounds. In a smaller economy it is likely that autistic job seekers will be less likely to find work.

I have seen humorous memes about autistic people benefiting from self-isolating. This is amusing and probably true but many quarantine situations will involve being confined with other people. This could be a nightmare for autistic people. I am currently in a rehabilitation hospital and I have been running the quarantine scenario through my head a lot and I really don’t want to be confined to a building with the same people for weeks on end! 

Another thing which people have been saying is that ‘I will be OK because I am not old or sick.’ A lot of the media about the virus has also focussed on this. I find this highly problematic. It is as if older and sick people don’t matter and the virus is not a concern because young and healthy people are not victims. My parents are in their seventies and I would be devastated if they caught the virus. It is not OK that the virus kills people that ‘aren’t me’.

Talking to children about the virus is a tricky thing. I have seen a few resources out there including one through Footprint Books. You don’t want to terrify them but you do want them to know things like the importance of hand hygiene and give some context to the media discussion fo COVID19.  Autistic kids (and adults) may be highly distressed if an event they were looking forward to is cancelled. Autistic children may become very focussed on the crisis and be highly anxious. It is a fine balance, somewhere between feeding into their fears or at the other extreme telling them that there is nothing to worry about. It may be worth scheduling a time where the can ask parents any questions they have about the virus. 

Panic buying is something which many of us find baffling. One of the issues with it is that it drives others to panic buy even if they don’t want to. For example if all the toilet paper is gone from the supermarket, someone who otherwise wouldn’t panic buy will grab any toilet paper if they see any because they know it will be gone soon. 

I am actually very concerned about the COVID 19 crisis and struggling with my anxiety. I am worried about the hospital I am in being quarantined or repurposed leading to my early discharge, I am worried about the economy and my job being affected, especially as I have been on sick leave for the past five months. I am worried about people I love and care for contracting the virus. I am hoping a vaccine is developed soon but until then I just have to manage my worry.  This is a very scary thing with the potential to disrupt society across the globe. 

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To medicate or not to medicate … and all the things wrong with anti-vax

CW Anti-vax, death

Medication is a vexed issue for many in the Neurodiversity community. Should you take medication, should you not take medication? Everyone seems to have an opinion and people are keen to tell you what to do in relation to yourself or your child.

I take a lot of medication, mostly for my mental illness (schizoaffective disorder). I need to take this medication. If I don’t take the medication I became either very depressed or very manic and experience psychosis. For me, not taking medication is not an option, even though I would love to be able to stop taking meds. My medication – like lots of medication – has side effects. For me these include weight gain, feeling sedated and tremors. One of my medications (Clozapine) has rare but potentially life-threatening side effects and I have to have regular blood tests and heart scans to ensure that these aren’t happening. Certainly a reason to want to not take medication, but as I mentioned, this is not an option for me. 

Despite the necessity for me to take meds I often have people telling me not to take meds. This tends to make me pretty unimpressed as part of my illness involves a lack of insight about the need for medication. If I am unwell and someone tells me to stop taking my meds I am very susceptible to this. I get quite angry when people tell me I don’t need meds or that the symptoms of my illness are in fact side effects form the medication. My theory is that people should refrain from giving advice to people which involves them stopping any medication unless that person is their doctor!

It isn’t as simple as that though. There is a reason many neurodiverse  people are wary of medication. Medications have been used as a sort of chemical straitjacket. In fact this is happening right now especially in institutional settings. People are easier to manage if they are sedated. Neurodiverse people are often misdiagnosed with psychiatric conditions and given inappropriate medication. And autistic people particularly  can respond atypically to medication, either needing a lot more than others or a lot less. When clinicians do not understand the needs or neurodiverse people there can be errors around medications. In some situations people have died as a result of poorly prescribed medication and a lack of knowledge by clinicians.

That being said there are a lot of reasons that medication is very positive for neurodiverse people. ADHD medications have been a life saver for many people – kids and adults – and many autistic people benefit from things like melatonin for sleep and low does of some antipsychotic medications for addressing repetitive thoughts and anxiety. Basically the decision to medicate for such tings is that of the individual who will be taking the meds or parent of the individual and needs to be made in consultation with a competent doctor. It is not appropriate to give people advice based on small amounts of information. When someone is deciding to medicate themselves or their child the last thing they need is everyone they know piling unhelpful advice on them.

However the is one area which is unequivocal and that is vaccinations for kids. A couple of years ago I told friends I planned to post about anti-vax and they said ‘are you sure…?’ as the anti-vax people can be pretty full on but I figure it needs to be said. And said again. For the twenty thousandth time. Anti-vax is nonsense and very dangerous nonsense at that.

The idea that vaccinating kids makes them autistic has been disproved in countless peer-reviewed, reputable studies but it persists. Not vaccinating kids leads to deaths and infection. It ithreatens to bring back diseases like polio which up until recently were considered controlled. Not vaccinating kids puts other kids and those with compromised immune systems at grave risk. 

Anti-vax confuses causation and correlation by comparing the rise in autism diagnosis rates with the rise in vaccination with the MMR vaccine. While there is a correlation (ie the graphs match each other) there is no causal link. You can compare the rise of all sorts of things with the rise in autism diagnoses but it is simply a correlation – two things occurring at similar rates at the same time. Correlation does not prove a linkage or cause for the two things. 

As an advocate one of my biggest issues with anti-vax is the message it sends about autism. If you believe that vaccinating your child causes autism so elect not to, you are demonstrating that you would prefer your child to potentially die than be autistic. That is a very sorry state of affairs and tells me as an autistic person that autistic people have no right to be here.  The person who is responsible for devising anti-vax in is current, anti-autistic form, Andrew Wakefield, has been stripped of his medical degree but is still active in peddling this hateful theory. One thing which really worries me about anti-vax is that it positions itself as an ‘alternative’ movement, challenging the status quo. I can tell you now that it is not an act of rebellion to not vaccinate a child. It is an act of foolishness and recklessness.

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“Look me in the eye.” “Why??”

I had a colleague in a former workplace who used to be a teacher. I told her about my (then) new book, the Wonderful World of Work, which is a guide to employment for autistic teens. My colleague got quite excited and went on to tell me how she knew heaps about autism because she had taught some autistic kids. ‘Oh dear’ I thought. My oh dear was justified. The colleague told me how she had an eleven year-old autistic student who didn’t look at her face when he spoke. She told me that she would put her finger under this kid’s chin and lift up his face so he was looking at her. She demonstrated by doing it to me. Horrified I asked if she would like someone in authority to do the same to her but she simply didn’t get it. I felt for all her autistic students and was very relieved that she was no longer teaching.

This example illustrates a problem a lot of autistic people face – the need that many allistic folks have for eye contact. To me, eye contact is invasive and painful. If I look someone in the eye I can see into their soul and feel like they can see into mine. It is horrible. People tell me that eye contact is an important part of communication, but for me, if I am looking someone in the eye I am unable two communicate in any meaningful way because I am so overwhelmed. Other autistic people have similar experiences.

In most of the societies where readers of this blog live, eye contact (for allistics at least) is viewed as a key to communication. People believe this to be a universal thing but it isn’t. In many cultures making eye contact is viewed as disrespectful.  In autistic society eye contact is definitely not essential and usually not wanted. It is another place where allistic and autistic intersect and where autistic experience is often viewed as bering ‘wrong’.

When I tell allistic people about my issues with eye contact they say ‘but you make eye contact.’ This is a bit shameful for a proud autistic person and advocate to admit but I have learned to mask eye contact. I look in the general vicinity of the person’s face but not in their eyes. In fact I do not know the eye colour of 99.9 per cent of the people I have met. I don’t know my mum or dad’s eye colour. I learned to mask because it is easier to do so than have people complain about me doing things ‘wrong’ but I am just as happy to carry on a conversation with someone without looking anywhere near their eyes. I do try to educate people but the need for eye contact seems pretty ingrained.

Eye contact is very confusing. On the rare occasions I have tried to do it I have come across a lot of hurdles. How long is one supposed to look at the eyes? Does one look continuously or look away every few seconds? Are there conversation topics which require more eye contact than others? It is very strange and alien to me. 

I wish people understood about differences around eye contact. There are myths around people who don’t do eye contact, The most prevalent seems to be the one that states that not making eye contact demonstrates that a person is untrustworthy or a liar. But maybe the person is just autistic and finds eye contact invasive and painful? There meeds to be a shift in thinking around this. 

I will never look someone in the eye but I am trustworthy and I can communicate very well. We need to challenge that pervasive view that making eye contact is a key part of communication for everyone. It isn’t and it is perfectly feasible to have meaningful conversations without all that invasive and overwhelming eyes meeting stuff. I want a world where I am not expected to make eye contact with people and where differences in the need for eye contact are known, understood and respected. 

Forcing autistic kids to make eye contact is really damaging. Eye contact is invasive and unpleasant and will actually make it harder for them to communicate.