Looking back and thinking forward

Parenting, hindsight and independence

Being the parent of an autistic child (or any child with additional needs) brings a whole load of extra challenges and expectations. I can’t speak for parents of those with the highest support needs, but as a ‘can almost pass for normal some of the time if the conditions are perfect’ autistic parent of a ‘can sometimes almost pass for normal if the conditions are perfect and he wants to’ autistic kid, it’s not as simple as intellectual ability plus verbal skills equals capable of independent living immediately upon reaching adulthood.

Despite the fact we know that autistic people often have ‘spiky profiles’*, ‘uneven development’ and ‘splinter skills’ there can be a lot of pressure to ‘support development’ and ‘encourage independence’. We often internalise the message that we need to be pushing our children to ‘keep up’, ‘catch up’ and ‘make progress’, and can be left feeling incompetent and inadequate when our children continue to need supports and adjustments (it’s even worse when other parents of autistic kids assume that because their offspring can do something yours should too).

Parenting forums and support groups for parents of autistic children are full of parents wanting to push their child’s development and meet typical milestones, desperate to make sure seemingly important developmental steps aren’t missed, keen to set their child on a trajectory towards independence. Once our kids hit their teens there can be a real sense of urgency to prepare them for being independent adults.

Independence is often heralded as the ‘optimal outcome’, but should it be? There is nothing inherently wrong with needing support or relying on other people to help. When wealthy, successful people employ cleaners and gardeners and cooks and drivers it’s seen as a status symbol, yet when disabled people (who might also be wealthy and successful, but far too often are not) employ others to meet daily needs it’s seen as dependence which us parents are led to view as a ‘Very Bad Thing’.

Personally, I think the teen years are tough enough for all kids, so my goal is to make them as easy as possible. Yes, we do need to keep a little corner of an eye on the future, but we also need to relax a bit and go with the ebb and flow as our kids grow up. Hindsight can show us where we laid good foundations in previous years and give us clues about where we need to shore them up for the future.

If parenting is about supporting and preparing our children for the future, whatever that future might be, every now and then it’s worth looking back to see what’s worked (and what hasn’t) and think forward to what might be useful for the future. In my experience, it always helps to hear from parents of similar children who are a few years ahead to help prepare for transitions and potential challenges.

My top 5 tips for parents of younger autistic children to make the teen years easier:

Don’t waste effort on transient skills

If your child doesn’t like playing in the playground or has unusual taste in toys and books, that’s ok. Don’t spend hours and hours encouraging, cajoling or forcing them to do things you think they should be doing so they can ‘fit in’ – there’s a good chance that by the time you’ve ‘succeeded’ their peers will have moved on to something else. It is far more useful for the future to support your child to be confident and happy doing what they enjoy. And it’s quite possible that what was an unusual interest at 7 becomes the foundation of a successful career by 21.

Future proof any routines

One thing I’m sure most parents of autistic kids know is that you can never tell which routines will be resisted, which will be open to change and which ones will become the immovable bedrocks of your child’s life, so it is really worth thinking ahead when setting up and agreeing routines. One of our rigid routines is a daily bath before bed, and now we are in the teen years, I am so glad we kept this routine! Whilst a younger child might accept a routine of bathing or showering on Wednesdays and Sundays, teenagers and young adults will almost certainly need a daily bath or shower.

Don’t force your kid to follow the crowd

I remember when my son was younger, and (seemingly) everyone telling me he would eat better/play better/learn better once he went to nursery/school/clubs. Back then the idea that his life (and ours too if I’m honest) would be easier if he copied his peers and adapted to ‘fit in’ was tempting. But it never happened. Now I’m proud of his stubbornness and immunity to peer pressure. He has found a group of friends where he is valued without having to perform or mask, and I’m hopeful that this will be a protective factor in the future.

Support self-regulation

Something I’ve learned in my work with offending adults is that if children and young people are controlled and shaped through external controls (eg rewards, consequences and punishments) they can fail to develop their own internal controls. I’ve met too many young adults who know their behaviours are destructive but they don’t know how to stop, and it’s a lot harder helping adults learn these skills than the child you have 24/7. We need our children to recognise their own cues (hunger, thirst, tiredness, stress) and learn how to respond to them. We need to help our children develop their own personal problem-solving toolkits. We must empower our children to self-regulate their own lives as much as they can. Self-awareness is vital for our children to become self-advocates.

Respect and encourage bodily autonomy

Don’t force unwanted tickles, hugs, kisses and physical contact onto your children. If they don’t like it you need to stop. Not only might it be causing sensory distress, but it sends a dreadful message about consent. We know that autistic children, teens and adults are more vulnerable to bullying, abuse and exploitation and we must equip them with the ability and confidence to say “No”. We must not teach them to ‘get used to’, ignore or override their discomfort.

If you have any more tips, please leave a comment. I would especially like to hear from autistic young adults and parents of autistic older teens and young adults who might have some tips for me and other parents of teenagers.

*apologies for overuse of ‘quote marks’, they mostly indicate my use of terms that I am not overly keen on but which I accept have a shared meaning.

Autistic Christmas

I haven’t really written much for a while, it often feels like everything has been said, and I’m not sure what I can add to the ever-growing treasure-trove of autistic writings. But, I remember back when my son was younger and I was looking for strategies to support him, and then when I was struggling and not sure about getting myself assessed, and I remember that what helped me most was reading lots of accounts by autistic people and parents of autistic children (autistic and otherwise). I didn’t always agree with what I read (and still don’t), but reading about the same thing from many different angles is helpful, even if it’s just to confirm that they’re wrong and I’m right…

I know that many others have written about Christmas for autistic people, especially how to help autistic children cope with the festivities and social requirements. From my perspective as a parent of an autistic child, much of what I’ve read has been about how to prepare autistic children to manage the social demands of Christmas. It has been more about moulding the child to fit the expectations and rather less about moulding Christmas to fit the child. It’s also become clear, as an autistic adult, that little thought goes into supporting us with Christmas.

Christmas can be the best time of year for some autistic people, families often do the same things every year with little change, the food is predictable and there is usually more choice and freedom around eating than usual, and for those autistics who like to plan and be in control, it offers an opportunity to show off fabulous organisational and hosting skills (I am not one of those autistics).

For many of us though, and for many of our children, Christmas and the preceding weeks can be incredibly difficult. This post is for us, so here are my tips for an actually autistic happy Christmas.

School children will almost certainly be overwhelmed and exhausted

November and December can be pretty awful for autistic pupils, particularly in primary schools. Predictable timetables are often set aside in favour of impromptu carol singing and rehearsals for Christmas performances. Pupils get increasingly excited and loud as Christmas gets closer. Talking and thinking about parties and presents can be very stressful for our children. Schools might bring in entertainers or have background music playing. The expectations to be happy and good for Father Christmas can be too much to ask of our more anxious children.

Schools can help by providing detailed and up-to-date timetables and supporting our children’s access to quiet spaces if needed. Schools also need to be aware of the sensory impact on our children, whether it’s the hypersensitive child struggling and shutting down with sensory overload, or the hyposensitive child unable to concentrate and hyperactive as a result of the sensory stimulation, or the child with a combination of hyper- and hypo-sensitivities whose reactions seem inexplicable to the teaching staff.

Parents can help by being aware of the challenges, helping prepare children for change but also advocating for their needs to be met. Those of us with children who hold it in all day and then release the tension at home need to think really carefully about what this cycle of suppression and explosion is doing to our children’s mental health and well-being. Don’t feel bad about keeping children off school if it’s all too much. From his second year of primary school I kept my son home every year on the day of the Christmas party, I did not ask permission, I merely informed school that he was unable to attend. The occasional strategic day off can really make a difference and be the difference between enduring and enjoying.

Autistic adults can find workplace social expectations and interactions complicated and anxiety-provoking

Workplaces in December are full of people talking about Christmas, asking about Christmas, distracted by Christmas and planning work parties. We might struggle with the same sensory and social difficulties as our children, but have often developed more sophisticated masking and coping skills which, under these festive pressures, can slip and crack. Up until I started to suspect I was autistic I did my best to join in and do what seemed expected, but slowly over the past decade or so, I became more confident in declining to join in things I knew I would struggle with.

Employers and colleagues could make things easier by not pressuring us to attend social events, or, even worse, making them compulsory. For me, twinkling lights, shiny decorations and Christmas music are a huge distraction when I’m trying to work. I accept that many people enjoy the chance to decorate the workspace and get in the ‘festive spirit’, but some discussion and accommodation would be welcome. This might be as simple as asking where to put things so they aren’t distracting or uncomfortable for the autistic employee. We might need explicit information about any workplace traditions, don’t assume we know just because you do, chances are we don’t.

When autistic people do want to attend parties and events, it would help if they were planned in a way that minimises social, sensory and other distress. It can help to have clear information about any dress-code, ideally there would be no dress-code so those of us who struggle with the sensory impact of clothing aren’t irritated and irritable because of what we are wearing. Provide information about the plans for the event, if the event has several stages, such as drinks at a bar followed by a sit down meal followed by dancing, make it clear it’s ok to pick and choose what to attend. I can manage a sit down meal but would struggle with the rest, if I know when and how things are happening I can plan and build my own coping strategies into the event. Think about the impact of background music, cracker-pulling and party poppers on your autistic employees and colleagues.

To my fellow autistic adults, don’t feel you must do and be like everyone else, it’s quite freeing to say no when you want to say no. I’ve found that pretty much everyone else is so wrapped up in their own Christmas stuff that they’re fairly oblivious to those, like me, who just want to ignore it all.

Family traditions and expectations might need to adapt and change

We don’t have extensive family obligations over Christmas, meaning we have been able to create a set of low-key Christmas traditions that work for us, without unwanted pressures and social demands. Perhaps the most important rule is that, apart from an Advent calendar, Christmas at home does not begin until school term has ended. Throughout December school pupils seem to get increasingly excited and excitable, and my son gets increasingly overwhelmed (and just a tad annoyed!) by it all.

During this period, home needs to be a safe place for him to escape and relax. School is CHRISTMAS CHRISTMAS CHRISTMAS all day long, so we keep home Christmas-free, predictable and ordinary. We put up a tree and decorations the first day of the school holidays, though even that is a concession to me as my son would probably prefer decorations to be displayed just on Christmas Day.

Mostly over Christmas our days are like any other day of the year. On Christmas Day we have breakfast together, which is always toast made under the grill and served in a toast rack, instead of toaster to plate as usual. The rest of the day is quiet and the only noticeable difference is free access to chocolates all day long. Some years ago we discovered that zoos and other attractions are often open on Boxing Day, so while everybody else is doing social and family activities, we take advantage and enjoy the relative peace and emptiness of a zoo, aquarium or, in recent years, the wonderful Eden Project. These places are too busy for us most of the year, but we wrap up warm and it’s a great opportunity to avoid crowds.

We are an autistic family so it’s fairly easy to meet all our needs simultaneously over Christmas. I am aware that for families with a mix of autistic and non-autistic adults and children it’s harder to balance all the needs, but care needs to be taken to ensure that autistic needs are not ignored or forgotten.

It is ok to decline invitations, or for different family members to attend or not attend different events. It might be easier to host so that autistic family members have some control and the safety of their own home and spaces and things. It might be easier to go visit but for a limited time or with one parent leaving earlier with the autistic child. Autistic adults and children need to feel able to use whatever helps them get through situations, and they need allies to support them.

Importantly, finding an event stressful doesn’t necessarily mean we don’t want to be there, we might just need to do that on our terms, with our chosen supports and strategies, and that needs to be ok. Headphones, hoodies, fidgets and screens can help, and they don’t always mean we are withdrawing, they can be exactly what we do need to enable us to participate.

Ultimately, family members need to think about, consider and listen to their autistic relatives. Spacing out seasonal activities, building in downtime and space for interests, picking and choosing what to attend, sticking to plans, encouraging self-advocacy and respecting the views and needs of autistic children and adults, will all go a long way to making Christmas easier and more enjoyable for everyone. And perhaps sometimes it would be good for autistic needs to come first…

Present buying can be tricky

One thing I suspect many of us have in common is an inability to hide our disappointment with a misjudged or unwanted present. We don’t set out to be ungrateful and we don’t want to hurt anyone’s feelings, but we can’t always hold back those initial thoughts and feelings. The more we try to remember to show gratitude the more stressed we get and the more likely we are to get it horribly and rudely wrong.

Surprises can be very difficult for autistic children and adults. I find this really problematic as I do actually like surprises, but only if they are things I have already identified to myself that I want or need, or something unusual and interesting that I would never have thought of but is exactly the sort of thing I would choose for myself. With my partner I manage this by adding lots of possible options to an Amazon wish list and enabling him to choose. I add things throughout the year and try to forget what I’ve added! My partner just provides a list, and has no expectations or desire for surprises or off-piste gifting.

My son did not like surprise presents until last year, but like me, it can be a tricky ask as he is quite particular about what he likes. It has always helped a lot when family ask what to buy and stick to the list, they then get his genuine response and thanks, rather than a somewhat blunt ‘what did you buy me this for?’. Many surprises have been completely ignored, whilst others, like the rare spinosaurus tooth, have become treasured possessions. Some autistic children prefer to know exactly what they are getting, and this can include needing presents left unwrapped. The anticipation and anxiety of not knowing can be too much pressure which takes away the joy. It doesn’t matter if tradition and the ‘rules’ say surprises are good and presents must be wrapped, if doing that causes unnecessary stress.

It’s important to do what works not what is expected when what’s expected is not what works, and I think that’s my message for enjoying Christmas. It doesn’t matter when and how you decorate and put up a tree, it doesn’t matter if your family Christmas ‘dinner’ is posh toast, it doesn’t matter if you stay home and open presents you asked for, and it doesn’t matter if you don’t leave the house for a week, what matters is doing what works and what’s best for you and your family.

Happy Christmas

[image shows a Christmassy sign with the words …Oh…Oh…Oh, which has been inverted from the original which said Ho…Ho…Ho…, which itself is an homage to our own Ho Ho Ho garland which we hang turned around to read Oh Oh Oh for a touch of festive subversion]

How not to do an autism conference: response from the NAS

Today I received a response from the NAS conference team following my blog post raising concerns about last week’s Autism and Mental Health conference. It is copied here in full with the writer’s permission:

Dear Paula,


Thanks again for your email and apologies I didn’t get back to you yesterday as planned. It’s been really useful for us to have this feedback and to think about how we can make our conferences more autism friendly.


We will certainly be incorporating many of the suggestions you have made into the logistics for our one-day conferences, such as providing lay out plans and quiet lunch areas. So thank you for raising these points. Some of your suggestions are part of our current practice, but we realise that we need to do more to ensure this practice is properly publicised and followed at all our conferences.


With 400 people at the Mental Health conference, we recognise that crowding was an issue. We rely on our venues to tell us how many people their rooms can accommodate and, in this case, we believe that their estimate of what the spaces could take were overly optimistic. We will be aware of this when using this venue in future and limit the numbers able to attend accordingly. We will also give feedback to the hotel in this regard. We understand that the large numbers attending led to long waits and crowds at lunch and to use the toilets and we do apologise for that.


With regard to the other points you have raised:


1) We will now put a much more spaced out row of chairs at the back of the room and will ensure this is reserved for autistic delegates who need space around them.
We already offer to reserve specific seats for delegates who need it (and there were several who reserved seats at the conference last week). The ‘special access requirements’ section on our registration forms is where delegates can ask to reserve a particular seating arrangement or for other specific needs (such as large print documentation, etc).We will now make this clearer on the form.


2) Our standard practice is to ensure food is properly labelled at refreshment breaks and lunchtime, but we apologise that this didn’t happen at last week’s conference. We will check that this has been done at future conferences.


3) Until now, we have not had specific rules for our quiet room. This is because we didn’t want to restrict people from using the room in the way that they need to, in order to feel most comfortable. Following your comments, we will now survey autistic delegates and ask whether there is a preference for clear rules about how to use the quiet room. If delegates tell us they would prefer a set of rules, it would be great if you and other autistic people could work with us to help decide what those rules should be. Could you let me know if you’d want to help with this?


4) Parking/ and more lunch and toilet areas:
When holding events for such a large number of people, unfortunately it is rare to find venues with more parking available than the hotel where the conference was held. However, as mentioned in your blog, we did warn people who needed to drive to arrive early to ensure they got a parking space, and also to encourage people who didn’t need to drive to consider using public transport.


5) In regards to sensory issues, we will no longer use the bell to signal the start of sessions.
With regards to the points you raise about Tony Attwood and his inappropriate use of humour.


We are very sorry that Professor Attwood’s presentations were upsetting to you and that this contributed to the distress you experienced at the conference. We send all our speakers an ‘’acceptable language’’ document prior to conferences. This was developed for us by a group of autistic adults and we ask that speakers respect the guidelines outlined in the document. However, the document does not currently address humour, and we will look at incorporating a section regarding humour into the guidelines, using the very excellent open letter Kate Fox drafted for guidance https://katefoxwriter.wordpress.com/2017/05/


Once again, we are sorry about your difficult experiences at the conference. We really do appreciate you taking the time to write to us: it’s been very helpful for us to have this feedback.


Going forward, if you would be interested and are available it would be great to have your input on the quiet room rules, and the new ‘humour’ section in the acceptable language guidance document. Would that be of interest to you?


Best wishes,

I have replied accepting their offer to be involved in any way to help make future conferences a better experience for autistic delegates.

How not to do an autism conference

Reflections on the NAS Autism and Mental Health conference 2017

It’s now two days since I attended the National Autistic Society’s ‘Autism and Mental Health’ conference at the Hilton in Reading. The event was attended by around 400 people and starred Tony Attwood and Wenn Lawson alongside other speakers. I was really looking forward to learning more about autistic mental health, but came away disappointed on many levels. Here’s why:

The venue was easy to get to and I arrived early as the pre-conference documentation indicated that parking was limited and that the alternative was parking further away and getting a bus. I struggle to use buses, they make me very anxious and to get through the day I needed to do as much as possible to reduce the avoidable anxieties.

  • Please consider using venues with sufficient parking.

The conference was held on the ground floor of the hotel, but it was poorly laid out and with insufficient signage. The bulk of the space was shared with other hotel users and it was not clear how to use the space. Hot drink preparation areas were at one end of a vast reception area and the only available seating was in the hotel bar at the other end.

  • Please consider providing layout plans.
  • Please consider delegates who have mobility and coordination difficulties.

Toilets, drinks and food all resulted in huge queues. Some queuing is inevitable at large events but this was unacceptable. The lunch queues were ridiculous and completely took over the space, making it easy to become overwhelmed and trapped. I suspected this might happen and got to lunch early, but was disappointed again at lack of signposting/labelling. It wasn’t clear what was available as food was spread across two spaces. Sandwiches were not labelled and many contained unidentified beige lumps in unidentified beige gloop. I was glad I’d brought snacks with me.

  • Please consider an alternative quiet area for lunch for your autistic/disabled delegates.
  • Please provide clear instructions about food arrangements. Providing a menu in advance would be helpful so we know what to expect.
  • Please provide food near the seating area, ideally with proper height dining tables, to support delegates with mobility and coordination difficulties.
  • Please choose a venue with more toilets and lunch logistics.

In the main conference room seats were tightly packed and with little space. Like many autistic people, I struggle with proximity to other people, have a need to move/fidget and often need to leave mid-way for the toilet, for some space, a break and to unwind for a bit before returning. I did ask to sit at the back near the door when I arrived, but having to explain a need for a particular seat (or any other adjustment) in front of others is never very dignified. I also had no way of reserving a suitable seat and struggled in later sessions to find suitable space.

  • Please consider creating priority seating for autistic/disabled delegates to meet our needs.

I was astonished that the NAS staff used a bell to encourage everyone to move onto the next session. It’s Autism 101 that many of us have sensory sensitivities so this was horrific, it was only years of conditioning that stopped me covering my ears and swearing at the bell-ringer. The organisers knew that there were autistic delegates (and at least one autistic speaker), but did this anyway. It was shockingly insensitive and very poor modelling of good practice… As always at these events, I was surprised how many delegates were heavily perfumed and I do hope they refrain from this in their day jobs.

  • Please consider your delegates’ sensory issues and please ask your non-autistic delegates to respect this too.

There was a quiet room provided which I eventually found, and while it was useful while I had it to myself, there were no guidelines on how to use it when sharing the space. I didn’t know if quiet meant silent, whether it was ok to to eat or drink in there, if ignoring other people in there was expected or rude. I abandoned it when the ambiguity made it more stressful being there than not.

  • Please provide some guidance on the use of the quiet room.

Providing a quiet room is not enough to ameliorate the challenges of the conference for autistic/disabled delegates. More thought needs to go into making the whole event inclusive and making adjustments and supports intrinsic. The NAS should be leading the field in this, modelling good autism practice in everything it does.

  • Please seek guidance from autistic conference speakers and delegates on how to make the whole experience better for us. The conference details listed autistic people among those who should attend, please make it easier for us to do this.

A woman next to me was struggling to hear a speaker (as was I but as usual I thought it was just me!) and asked for the sound to be adjusted/raised. The tech guy’s response was along the lines of “there’s nothing I can do, I can hear it fine”. This is very poor practice, and exactly the sort of thing many disabled people experience in day to day life. There may well not have been anything he could do, but his blasé response to our difficulties was not in the spirit of inclusion.

  • Please ask conference staff not to dismiss delegate requests.

I was disappointed that there weren’t more autistic speakers, I believe that Wenn Lawson was the only autistic speaker. It would have been helpful to have some more personal experiences, especially as many in the audience were, or were working with, parents of autistic children. As a parent of a child struggling with their mental health it is always helpful to hear from older autistics who have been through some of the very serious mental health problems being talked about. As parents we need to know it can get better. The day also seemed to largely focus on autistic people without intellectual/language disabilities, this wasn’t made clear in the programme and was disappointing.

  • Please include more autistic speakers in your conferences.
  • Please don’t forget that autistic people with intellectual, cognitive and language difficulties also experience mental health problems.

The worst part of the day was Tony Attwood. I was so looking forward to hearing him speak. His books were instrumental in giving me the knowledge I needed to get my son assessed and diagnosed when it felt like nobody else believed me. Clearly he is very knowledgeable and has a good understanding of the Asperger-type presentation of autism. But his talks were chock-full of jokes at our expense. It was very much an outsider looking in at the autistics and their funny little ways, oh how amusing we are, oh how the audience laughed at his quips about suicide, special interests, IQ, virginity and robots.

Attwood’s presentations came across as exploitative and offensive. He succeeded in othering autistic people and using us as the butt of his jokes. I now know that he has form for this and considers joking about autistic people a form of neurotypical social bonding, performing a sort of disparagement humour to bolster his material. It was like a trip in time back to the 70s where Alf Garnett discovers autism.

It really is not acceptable for a person in a position of power and influence to exploit a vulnerable and marginal group to raise laughs. It is surely unprofessional to talk about your clients and service users in such a disparaging way. I would guess that the majority of the audience were professionals. I would hate for any professional to talk about me or my son in this way.

I wonder if the time has come where people like Attwood, who were key figures in increasing understanding of the autism spectrum, but who are not autistic, need to step aside, accept their success, but let us speak for ourselves. There are autistic psychologists, researchers and writers (and many other things besides) who should be promoted and platformed. If we can say it for ourselves we do not need a neurotypical to say it for us.

  • Please produce some guidance for your speakers about respecting the subjects of their material.
  • Please don’t book speakers who mock and ridicule autistic people.
  • Please let us speak for ourselves when we can. If you are booking a big name speaker to attract participants let us share the platform.

To end, I think the NAS do some fantastic work, but it feels like there’s a disconnect between the different parts. The conference team need to take on board the work of the campaigning team. The NAS is the biggest autism charity in the UK and it needs to show everyone else how to get things right. Whether it’s training, supporting, housing or holding events for and about autistic people, it needs to demonstrate best practice.

I would like to thank Lucy Sanctuary for her fantastic talk about the benefits of speech and language therapy for mental health difficulties. Thanks also to her daughter who spoke to us via a film clip.

Please read my next post to see the reply from the NAS 🙂

shit I learned at #speakersday

I don’t usually swear in posts, but I do swear a lot when I speak, and I am writing this while I recover from a long drive, a couple of nights away from home and lots and lots of peopling, meaning my ability to put words together is a bit challenged, so I need to make full use of whatever vocabulary I can find. Yesterday I attended the National Autistic Society’s ‘Public speaking for autistic people’ course in Wrexham, 210 miles from home. It was brilliant and illuminating and I learned shitloads of stuff.

I learned that I really really like driving on motorways, especially if I imagine that I am appearing in a Top Gear challenge. My friend @PdaSoapbox was travelling by train from the opposite direction, and we supported and encouraged each other by text throughout the journey (I only texted when I stopped for breaks, not when driving). She was largely unaware that she was part of my imaginary challenge, and I don’t think she’s a Top Gear fan… but it made me laugh to myself as I drove, because, contrary to the stereotypes, us autistic people can imagine and we do do humour.

I learned that being drawn towards the written word is a pain in the arse when signs are bilingual. If there is written information within my field of vision I have to read it. It doesn’t matter what it is, I have to know what it says. This is fine with English language words, which I can scan and process quickly, but less so with Welsh. I have nothing against Wales or the Welsh language, but bilingual signs mean my brain tries to make sense of all the words, including the Welsh words, which I don’t have a hope in hell of decoding, but my brain has to give it a go just in case. I did not miss a turn until I crossed the border 😉

I learned that being among autistic women is perhaps the most empowering and comfortable place in the world to be. I have never felt so normal, so like other people, it was magical. Meeting people I’ve only ever interacted with on the internet in real life was like meeting up with the long lost friends I never knew I had.

I learned that friendships made online can be as strong, meaningful and real, and engender the same loyalties as those made in the ‘real world’.

I learned that I’m not the shy introvert I had always assumed myself to be. I haven’t been avoiding social interaction for most of a lifetime because I didn’t want to or didn’t need it. I’ve avoided it because it’s so hard when you don’t know and can’t follow the social rules of the majority neurotype. I actually love just chatting with people, singly and in groups, and yesterday I could do that without the complicated interchanges usually required. There were no raised eyebrows and affected manners, as people just did what they needed to do. Stripped bare of the tacit and often arbitrary rules of the typical social world, interaction became easy and natural. People and topics ebbed and flowed.

I learned that I am not able to easily switch between roles. As part of the day we had the opportunity to perform a brief presentation and receive feedback. I had not prepared one of my own as I knew it would make me more anxious on top of all the other anxieties. It’s not uncommon for me to make a decision about something without knowing why and then having my ‘Oh fuck, that’s why’ lightbulb moment later on. Partway through the morning yesterday I realised that my trepidation about doing a presentation was because of this struggle with switching between roles. To engage with the training and learn well, I needed to be in ‘listening and learning’ mode. To do a presentation I would need to be in ‘controlled and performing’ mode. There wasn’t time to switch roles and I knew as soon as the afternoon session began that I had made the right call, I was in no place to perform ‘speaker role’.

I learned more than I could have hoped to about public speaking. Sarah Hendrickx and the NAS training team should be commended for providing such a thoughtful and perfectly executed event.

Throughout my professional life I attended a lot of training, this may have been the first time I haven’t wanted a training day to end.

Thank you to everyone involved and everyone who attended.

What a day 🙂

Visuals for grown ups

[image shows a view ahead of an empty road bordered by tall conifers with a pale green text box with the words ‘Visuals for grown ups’ in black text]
A mainstay of advice for supporting autistic children is the use of ‘visuals’. When I attended the NAS’s Early Bird Plus course after my son was diagnosed there was a strong emphasis on visual supports. Autism advisory services to schools almost always recommend visual timetables, schedules and prompts. There is a massive market in ready made visual supports for autistic children, ranging from elaborate daily planners to portable and wearable symbols.

Like many parents I got sucked into buying a laminator and sticky-backed velcro so I too could produce marvellous visual supports to make life easier. As mentioned in a previous post, I soon realised that for my son, the process of creating the visuals was the most useful element. Talking about what we wanted to achieve proved to be motivating and organising for us both. Although we might refer to the content of that discussion for many months or years to follow, the actual finished (beautifully laminated) product was usually swiftly abandoned.

Despite this, for many autistic children the use of visual supports is helpful, and not just for children who have limited verbal or reading skills. Visuals can also be helpful for keeping teaching and support staff on track, providing a reminder not to make changes without forewarning children who might struggle with the unexpected.

But visual supports aren’t just for children.

Grown ups, of all abilities and with all sorts of support needs, can benefit too.

Chatting with a friend by email at the weekend (my favourite sort of chatting), I suddenly realised how much I rely on visual supports, especially for new experiences. We were discussing our plans for attending an NAS course next week (‘Public speaking for autistic people’) in Wrexham, Wales, many miles from both of us. We are both attending and staying over 2 nights, she travelling by train and bus, me by car. Without having discussed the specifics, it turned out we had both come to be using virtually identical strategies to help relieve some of our anxiety.

We had produced our own visual supports.

Our visuals aren’t laminated or velcroed, and they aren’t stuck on a wall or attached to a carabiner, they’re in our smartphones and tablets. Our visual supports are a series of photos and screenshots of where we are going, the information we’ve been provided about the course, the venue, route plans and timetables, information about hotel bookings and food options.

As the event draws closer I’m spending more and more time on Trip Advisor poring over the photos of the hotel, the car park, reception desk and possible room layouts. Within the next few days I will start doing the same with google maps, satellite images and street view, and will probably take more screenshots to add to my visual security blanket.

All of this takes time, but nobody sees me hard at work, quietly preparing my supports, carefully erecting my scaffold, getting myself ready to do a new thing. One of the best things about chatting with other autistic people is finding out they do these things too 🙂

Assessment denied

[image shows the text ‘Assessment Denied’ on a brick wall]

Gatekeepers, hurdles and ignorance on the path to diagnosis

Despite increased awareness of autism in women, there are still too many cases of women being unable to access or denied assessment. Whilst the average waiting list time for adults from referral to diagnosis in the UK is around two years, many women are not even getting on the waiting lists as their access is scuppered by gatekeepers, hurdles and ignorance.

The NICE Guidance for Autism in adults provides a set of principles to identify who should be referred for assessment and best practice guidance for the assessment and diagnostic process. Very simply, if an adult might be autistic they should be referred for assessment. Local health authorities are supposed to provide clear diagnostic pathways to carry out assessments, staffed by trained, competent professionals. Unfortunately, the postcode lottery of the NHS means that whilst some areas have fantastic services, others are fragmented, inaccessible or non-existent.


When I first started seriously considering assessment for myself I looked into my local provision and researched the experiences of others in my area. I quickly concluded that the cumbersome set-up here would require me to get past a series of gatekeepers and I did not feel strong enough to do that. At the point where I most needed diagnosis I was least able to advocate for myself.

For me, these gatekeepers would have started with my GP and progressed through the filtering layers of local mental health services. I would have had to ‘state my case’ repeatedly to a series of people with the power to let me through to the next level, until eventually, if I was lucky, I would reach the autism specialists. The prevailing ‘deficit model of autism’ would have meant me needing to repeatedly explain my failings and inadequacies to new people. Over and over I would need to elaborate on my deficiencies as a human. I just couldn’t face it.

The fundamental problem with this model is that the gatekeepers are not autism specialists, they often having minimal training and little experience of autism. If they are relying on the prevailing stereotypes of autism, and I have met many professionals who do, they are unlikely to see the autism in a superficially capable autistic woman.

Like me, many women who seek diagnosis as an adult have reached a point in their lives where demands have exceeded capacity. We are often fragile and vulnerable at the point where we ask for help. Many women, when told by a gatekeeping professional that they do not meet the criteria for assessment (bearing in mind that this criteria is often outdated and sometimes unfounded) give up. Often these women have far more knowledge and awareness of autism than the professionals tasked with gatekeeping.

Gatekeepers need to be be equipped with the knowledge, skills and tools to ensure that those in need of assessment get assessed.


Once past the gatekeepers the path to assessment may still be littered with hurdles. A common hurdle is when diagnostic services will not diagnose without the involvement of a family member who can provide information about childhood development. The reason given is that for a credible diagnosis there needs to be evidence of autism being present in early childhood. This particular hurdle is problematic in several ways.

Many adults seeking assessment do not want to tell their families of their suspicions. This might be because they don’t want to worry their families, or they feel that their family would be unsupportive, or because of difficult family relationships.

As we get older the pool of people who might be in a position to verify our early development gets smaller. Memories become faded and unreliable. Our loved ones might struggle to remember long ago details or may feel disloyal recounting detail of our struggles and problems.

Some adults lose contact with wider family members. Our social and communication difficulties might mean we struggle to maintain relationships with our families. We might have cut off, or been cut off by, family members who we find hard to maintain relationships with.

Autism is always a ‘best guess’ differential diagnosis, one made on a balance of probabilities. If evidence from adulthood, through self report, clinical presentation or scores from recognised diagnostic tools, is indicative of autism, it is my opinion that diagnosis should be given.

Lisa Sanders’ 2010 book ‘Diagnosis: Dispatches from the Frontlines of Medical Mysteries’ (London: Icon Books) describes the centrality of ‘patient story’, how 70-90% of medical diagnoses are made on patient account alone. If this is the case across medicine, it begs the question of why autism diagnosis is held to a different standard. How can a patient’s account be enough for most of medicine, but not for autism?

Autism diagnosis should not be withheld in the absence of family verification. Clinicians need to have faith in their patients, themselves and the tools they use.


Having spent a long time exploring and working myself up to request assessment, I became increasingly aware that many women were being denied access to assessments because they were considered too capable. It seems that for some gatekeepers, clinicians and assessment teams, being educated, having a job, a mortgage, being married or in a stable relationship and being a parent, means you can’t be autistic.

These clinicians seems to have missed the part in the DSM5 which states that ‘symptoms’ “…may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life”. I knew that, superficially, I was doing great. I have a home, a family, an array of academic and professional qualifications, and a job requiring adaptable and nuanced communication across a very broad range of clients and needs. How could I persuade the gatekeepers that I was, in fact, about to crumple?

I have written before about masking and performing normal. Masking can be an active choice but is often more subconscious, a product of our socialisation and experience. Some of our masks may start as choices but over time they become almost automated. Without thinking about it our subconscious applies the correct mask enabling us to adopt the roles we need to manage the spheres of our lives.

Dig a bit deeper beyond the surface and very often you’ll find a hoard of sophisticated coping strategies. We have no choice but to develop these coping strategies to help us lead our lives as best we can. Masking is often a big part of this. We often spend so much time on managing our coping strategies that we have no time left for ordinary life. This is where you find the hidden autism. And when you look deeper, it’s often not very hidden at all, you just weren’t looking properly.

Denying assessment to people who appear too successful to be autistic implies that autistic people cannot be successful. This is a very worrying assumption.

It is also wrong.

edit: I was lucky to be able to fund a private assessment through a charity. Many people are not in a position to do this. That is why I wrote this post.