This blog will give you 20 tips to help you raise an autistic child and support you along your journey.
My name is Jo, and I am a Pathological Demand Avoidant autistic. My husband is also autistic, and we are raising an autistic child with Global Development Delay.
If you are at the beginning of the autism diagnosis journey with your child, I have been there. I have jumped through all of the procedural hoops, fought all of the fights to get my son what he needs, and most notably, I am autistic myself.
It’s great that you are researching and looking for guidance on how to raise, support and understand your autistic child. Raising a child is hard when you have thesame neurological wiring… it’s incredibly hard when you don’t.
If you are at the beginning of the journey, I expect that you are going through a wide range of emotions, feeling totally out of your depth, and having fear-of- the-unknown thrown into the mix for good measure. That is a completely normal reaction. But the more guidance and support that you get, the more confident you will be in supporting and helping your child in the best way that he or she needs.
Most importantly, YOU ARE NOT ALONE. It can be a very isolating experience, especially in play groups, but there are thousands upon thousands of parents going through the same thing that you are.
So, here are twenty tips to help you on your journey:
1. Like neurotypical children (non-autistic), autistic children are all different.
The spectrum is not a line where you can mark where your child sits on it. It is more like the image shown below.
Some things that work with one autistic child won’t work with others – you will need to experiment with what works and what doesn’t with your child.
2. Talk to and learn from autistic adults.
They are generally more-than-happy to answer any questions you may have.
Many neurotypical (NT) parents of autistic kids feel that the autistic adults are nowhere near as severe or impaired as their children, so those autistic adultscouldn’t possibly understand their family’s struggles.
The truth? We WERE those children. The difference between autistic children and autistic adults is that we’ve had years of practice with masking, self-regulation, social interactions, and how to manage our limitations– autistic children haven’t had that practice or necessary experience. Just becauseautistics don’t meet NT developmental milestones at the same pace doesn’t mean they’ll never get there.
Autistic adults are a gold mine of knowledge on different tactics, things to try, things to avoid, etc. Mostly, though, they have first-hand knowledge on how autistic children’s brains work.
3. Accept your children for who they are. COMPLETELY.
Your child is different and has been given the gift of seeing and experiencing the world differently. No, it’s not all sunshine and rainbows-– every gift is balanced out with a measure of hardship and impairment; but, trust me, if your children receive the love, understanding, support, and guidance tailored to their needs, they will thrive.
Famous autistics include Einstein, Issac Newton, Mozart, da Vinci, Bill Gates, Steve Jobs, Picasso, Bach, Melville, Tesla, Twain, and Anthony Hopkins. I could list off a lot more, but you get my point. Many of the aforementioned trailblazers had severe struggles.
They are a square peg in a round-peg world. No amount of pushing or turning will make them a round peg.
5. Fight, fight, FIGHT for the right support, therapies, diagnoses, and school placement for your child.
The government in the UK does not budget enough for autistic supports/diagnostics, so you need to be prepared to fight for what your child needs. I hear in the US, the availability for quality supports varies from neighbourhood to neighbourhood.
You know your child better than anyone in the world. Don’t be afraid to question doctors or specialists-– they are getting a snap shot image of your child, whereas you live with them 24-7. Trust your instincts, and feel proud of yourself for doing the hard work of advocacy. It’s thankless, but well worth it for your child.
6. Manage their sensory needs.
One of the main struggles for autistics is managing sensory issues– both hypersensitivities and hyposensitivities.
There are 8 different senses: sight, hearing, smell, taste, touch, vestibular, interoceptive, and proprioceptive. You may not know much about the last three on the list, but they are very important senses when it comes to the autistic sensory profile.
Autistics can suffer with something called sensory overwhelm which is often caused by experiencing too much of one type of sensory input faster than the brain cannot process or filter it. This can cause panic, anxiety, and a fight-or- flight response which can display as violence. It’s important to note, though, that most autistic people are not violent.
It is possible to tell when someone is reaching the point of overwhelm– this is the time to either remove the offending stimulus or remove the person/child from that environment before overwhelm occurs.
Autistics can also be hypo-sensitive to sensory stimuli which means that they may actively seek out sensory input. This is known as sensory seeking.
Sensory seeking children may be clumsy, have great difficulty in sitting still, enjoy bouncing off of furniture or trampolines, and enjoy chewing on clothing or items.
7. If your child has sensory issues, find a good occupational therapist specialized in sensory management.
An occupational therapist with the right background can not only help your child by providing the stimuli they need to regulate their sensory systems, butthey can also teach you how to recognize your child’s signals that they areover- or under-stimulated. They can also tailor a sensory diet that you can provide your child at home. When a child is regulated, they are calmer, happier kids who are far more likely to be able to sit still, interact, and concentrate.
8. Give extra time for information processing.
Autistic brains process information differently from their NT
counterparts. Some can process information very quickly and can therefore react or respond at incredible speed whereas some process information very slowly and take longer to react or respond.
This means, in layman’s terms, that when you ask someone with slowerauditory processing speed to do something, it takes longer to understand what has been heard and then more time to work out how to respond to it or what to do to comply with the request.
For the person making the request, this can be quite frustrating and they often make the same request using different words to ensure the question has been understood. The problem here is that, when you make the request using different words, their brains have to start processing this new sentence all over again. So, by asking again differently, you are doubling the processing time. They can become frustrated with too much information and lash out or feel assaulted.
The tip here is, if your child has a slow processing speed, give them extra time to process. If you ask a question or make a request, wait for their response. They are often not ignoring you, they are processing what you have said to them.
This also applies to activities such as trying to leave the house with your child– give extra time for them to process what they need to do: put on shoes, put on coat, pack a backpack, etc. Having slower processing speed does not reflect on intellectual abilities at all.
9. Non-verbal children can hear and understand more than you think.
A common misconception of non-verbal children is that, if they don’t communicate with words, they can’t understand words either. Many non- verbal children understand words and conversations long before they can talk and may go on to be prolific writers or even speakers.
Don’t presume your non-verbal child can’t understand what is being said around them. Be careful of what you say, as talking negatively about how their struggles affect you or others within their earshot will still affect their self- esteem and self-worth.
10. Adapt your parenting style to suit your child’s needs.
Before you become a parent, you have an ideal in your head of what kind of parent you are going to be, what your child will and will not be allowed to do, what boundaries will be set, or the places you will frequent with your child.
When you have an autistic child, you need to throw that ideal out the window and adapt your parenting style to fit what your child needs.
Child-led parenting works very well with autistic children as they will indicate toyou what they can’t tolerate or what they enjoy doing– these things may be totally different to what you expect them to be. Listen to them.
11. Let them stim!
Stimming is short for self-stimulatory behavior. Whether it’s arm flapping,rocking, squeaking, fiddling– let your child stim. Whether you find it embarrassing or unusual, stimming actually serves a sophisticated purpose for your child. It brings joy, self-regulation, and calm– why stop that?
By shaming this behavior or stopping them from stimming, you can cause them anxiety, frustration, and unease.
12. Don’t shout.
I’m guilty of shouting when I have reached the end of my tether and myfrustration is through the roof; but you will find, as I have, that shouting at an autistic child does not achieve the response that you are hoping for. You will generally either be totally ignored or you will cause a great deal of anxiety and potentially a fight-or-flight response in your child.
13. Know when to push and when to back down.
Where sensory sensitivities and overwhelm are concerned, your child will have good days and bad days. It was explained to me like this: overwhelm is like a bottle of cola. Every time you experience anxiety/sensory difficulties the bottle is shaken. After it has been shaken enough times, the lid blows off and overwhelm erupts.
Some days when your child wakes up, the cola is still and calm in the
bottle. Some days your child wakes and it is like the bottle has been shaken several times already. The tip here is to learn to read the signs that your child’s internal pressure is high or near the eruption point.
You can push your child to do more when their mood is better and their tension lower. Pushing them when they’re already overwhelmed feels traumatic and abusive to them. Learn when to push and when to back down with your child. It will reduce meltdowns and overwhelm explosions.
14. Encourage their passion/special interests.
I cannot express how much joy is experienced when an autistic is indulging in their passion or special interest. Whether you think it isn’t age-appropriate (a teenager watching kids TV or a five year old interested in quantum physics), or if it’s something that you think is weird (the history of sewing machines or the evolution of the light bulb), encourage it.
Chris Packham is a great example of how a special interest can turn into a very profitable and long career. His special interest is insects and animals. He has now been the insect and animal expert on many programmes over the years and loves his job.
15. Steer clear of ABA therapy.
This tip is in capitals because it is so incredibly important. ABA is a behavioural therapy that essentially tells your autistic child that there is something wrong or broken in them and that they need to pretend to be like everyone else in order to fit in or to be considered a functional member of society. It is widely despised by the autistic community.
If you are in the US, you’ll get pressure from doctors, schools, and otherprofessionals to enroll your child in ABA. Please don’t put your child through
this. Adults who have gone through ABA experience higher incidence of PTSD.
16. Find good support groups for you and members of your family.
There is no doubt that NT families who have an autistic child can struggle with the strain of their child’s impairments and needs. If your social circle or usual support network does not have any autistics in it or have any experience with autistics, then a good support group for you or any member of your family is especially helpful.
There are a great deal of different Autism Support Groups on Facebook; some helpful, some awful. You’ll need to try out different ones until you find some that you are happy with, but I cannot define how helpful talking to other people in the same situation will help you and relieve some of your anxiety and stress.
There are also different support groups offline where you can take your child who also have fun days and outings for siblings of autistic children. Definitely worth checking for any in your area.
Everyone needs support in their lives at some point. With the marvels of technology, you can find a wealth of support online to help you through the bad days.
17. Understand demand avoidance.
All autistics experience a degree of demand avoidance. This can be perceived as the child being deliberately difficult or stubborn, but in reality, you are asking them to do something and their brain has hit a brick wall. They simply can’t follow the demand.
This is not intentional and they have very little control over it. There are different ways to get around demand avoidance– offering choices is a very effective way as then the demand is turned into a choice that is easier to accept.
There are many conditions which are associated with or highly-correlated with autism, like Sensory Processing Disorder, ADHD, and Pathological Demand Avoidance. Among other individual attributes, having demand avoidance to an extreme, pathological degree (as the name states) is the defining impairment.
Getting frustrated at them will not make them overcome the demand avoidance; it will just make it worse. It can feel important to “break” thewillfulness of the child so that they are able to comply with school and, later, work demands.
But, this trait often becomes a passionate driver for leadership and leads to powerful advocacy for self-industry, social justice, and personal
autonomy. It’s better to empower this trait and encourage making wise decisions and provide options than to attempt to punish and shame the child into compliance.
18. Work with the food aversions and sensitivities.
It is very common for autistics to have some amount of food aversion. This can be caused by a sensory difficulty (texture, taste, smell), whether the food is dry or wet or even by the colour of the food. In some instances, the autistic child cannot tell you why they cannot eat something. For me, it’s broken eggs(where the yolk is broken and mixes with the white). I simply cannot eat a broken egg and if the yolk splits in the frying pan, then it goes into the bin, and I start again. I have no idea why this is.
The important thing here is to accept that your child cannot eat specific foods that they are adverse to and try to slowly introduce other foods into their diet.
Under no circumstances should you ever force-feed your child or shame them for not eating the food that you have given them. All this will achieve is creating an issue with food in general and foster a great deal of anxiety for your child. Later, food-associated trauma can manifest as life-threatening eating disorders.
19. Tell your extended family your child’s autistic with confidence and positivity.
This can be a very anxious time for you as well as your child.
Choose when and whom you want to know and make notes of the important points that you want to raise. It is very easy for your memory to fail you during an important conversation.
The main thing here is to be positive. Your child needs you to be their advocate and that starts in the home and with extended family. There are many positives to being autistic. Do not focus on the impairments that your child may also have.
Older generations will likely have a different viewpoint of autism, and you need to be prepared to answer any questions they may have. Be prepared for the “don’t accept labels” conversation.
20. Love your child.
This may be the most important tip of them all. Even if you don’t understand him or her yet, just love your child. So many autistic children have low self- esteem and low self-worth because they don’t feel loved or accepted for who they are. But, like your child, too.
The difference it makes in the confidence and self-worth of the child is immeasurable. Take it from someone who knows.
So there you have it! Your 20 top tips on how to raise your autistic child.
I hope that you have gleamed something useful along the way here and that you continue to research and learn as much as you can for your child.
By Jo Richardson
For other useful resources visit our blog.
In this blog I will talk about the anxiety demon and how this impacts me as an autistic adult.
I have always been different, although I did not understand why until I was diagnosed last year as being autistic; as my son started his autism assessment.
Among other aspects of being autistic, one that has always affected me strongly is anxiety.
Anxiety is like having a voice in your head whispering all the things that can go wrong in any situation and not having the means to shut it out. For some of us, anxiety is part of daily life; a constant battle to overcome the anxiety to sometimes do the simplest of things.
People often believe that anxiety is situational or only happens during stressful periods. This isn’t entirely the case; like a lot of autistics, I overthink everything and replay conversations and events in my head on a constant loop while my anxiety demon is chastising my choices, actions or social interactions; making my anxiety peak.
It convinces me that I have made a fool of myself, that I’ve been misunderstood or that I’ve made a mistake and making me dread being in these situations again in case I repeat history.
My experience of anxiety
When faced with new situations or social events, our anxiety demon’s voice grows louder, demanding our full attention; overwhelming all other thoughts that we are trying to process.
“What if it’s too loud and there are too many people?”
“What if I get overwhelmed?”
“When will I be able to leave?”
“What if I say something stupid?”
“What will I be expected to do or act like?”
“What’s going to happen and when?”
“Will people dislike or laugh at me thinking that I’m weird?”
These are just some of the things that my anxiety demon says to me when I consider socialising or going somewhere new.
As an adult, I am able to manage my anxiety to an extent; I have worked out what situations I need to avoid, what I can do to prepare for new situations and how to self-regulate.
Our children do not have this experience yet. Most young children do not understand what they are feeling or why, so they need us to be able to read their signals and understand when and why their anxiety is high and, most importantly, how to help them manage it.
At this time of year, our children are probably experiencing a high level of anxiety having either started school or advancing a year.
So many aspects are out of their control as well as having both educational and social demands put on them continuously that can trigger their demand avoidance in a situation where they cannot easily avoid these demands.
The first year of school can be so daunting for any child but more so for autistic children. It may be their first time away from being at home with a parent or carer full time, everything is new, theydon’t know the environment, they don’t know what is expected of them, whether they’ll get overwhelmed, what the other children will be like, whether they’ll make friends, will they fit in, etc.
Consider for a moment that you are facing all of these things and your anxiety demon is constantly whispering that it will all go wrong, that you won’t cope, that no one will like you, that you’ll fail.
When I was at school, diagnoses weren’t common place and the schools weren’t as quick to recognise the struggles that autistics experience as they are nowadays, so it was a case that I had to try to manage my anxiety myself.
This took the form of leaving classes as soon as they finished so that I could spend some time on my own in a quiet bathroom before rushing off to the next class as well as spending break times and lunchtimes alone and away from everyone else in the playground.
When I got home, I would spend all of my time alone in my bedroom immersed in video games that I could escape into; blocking out reality and all other stimuli for a while. This would quieten the anxiety demon as I was focused so heavily on the game that I couldn’t hear it as much.
Without doing this I would often spiral into meltdown or would lash out at family members because I had, unknowingly, been masking all day (hiding my anxiety and differences to my peers) so when I returned to the safety of my house, all of the anxiety and overwhelm from the day would explode out of me.
Nowadays there are many different tactics, equipment and toys that can help autistic children manage and cope with their anxiety as well as different methods of signalling others that their anxiety is high and that they’re not coping. I would have found these invaluable when I was young.
An important fact to remember is that an anxious or overwhelmed child is incapable of learning effectively. They are not able to process all of the information they are being given. Therefore it is imperative that measures are taken in order to help them to regulate their anxiety and overwhelm while at school.
By Jo Richardson
Read more from Jo:
Sensory Survival: Living with hypersensitivity, being overwhelmed and experiencing meltdowns as an autistic adult
So here we are in Autism Awareness month – the one month out of the year where more of the general public take an interest and are more open to learning about Autism and Autistic’s lives.
I herald it. It is a great opportunity for both neurotypicals and neurodiverse to come together and openly discuss what makes us different and how we can all live together in this wonderful world of ours.
What I want to explain to you today is a first person’s viewpoint of sensory hypersensitivity, overwhelm and meltdowns.
Our sensory sensitivities wield a great deal of power as they can push us to overwhelm and meltdown as well as bring us an abundance of joy. There is also hyposensitivity in a sensory area such as having a very high pain tolerance or not being able to smell strong odours.
The more I have learnt about Autism, the more I have recognised and understood myself and aspects of my instincts that I didn’t before. I have always been classed as ‘highly sensitive’ to pain and physical contact. I struggle with bright lights and noise, I hate swaying or spinning motion, I cannot cope in big crowds where there is a lot of competing noises and my sense of smell is often overpowering.
When someone says that they have a sensory sensitivity it is a common misconception that they mean that their awareness is just more acute, more focused. The reality of sensory sensitivity is that the sensory input is so greatly intensified that it can become all-encompassing and overwhelming in a short period of time, unless the person is able to take measures to reduce the overwhelm or remove the offending sensory input. It often causes the person experiencing it to not be able to take in any other input at that time or think of anything other than the stimuli that is overwhelming them.
Some autistics that have a hypersensitivity to touch can be caused physical pain when they are touched; no matter how lightly. Their brain misinterprets the signals from the touch and causes the pain reaction.
When I am in a crowd; even if it is just in a shopping centre, it feels like the noise is so loud and imposing that it is all I can think about and feel. It is like the intensity of the world has been turned to its highest setting and it feels like I have dozens of people in my personal space; all talking loudly at the same time and I am trying to understand what they are all saying. This is the start of overwhelm. It feels like my brain is being squeezed and all of my muscles tense up. My heart races fast and my breathing quicken. At this point I lose the ability to think straight and my thoughts sound like they are overlapping and nonsensical. This is when the fight or flight response kicks in and everything in your mind and body are screaming at you to run. To get out. To get away from this stimuli as fast as humanly possible. The other side of this coin is the fight mode; where you are so desperate for the stimuli and all of the sensations you are feeling to stop that you lash out and push, kick, scream, anything in order to make it all stop.
Overwhelm can happen with any sensory sensitivity; whether it be sound, taste, touch, vestibular, proprioceptive or interceptive. All of which are triggered in different ways in correlation to the individual’s sensitivities.
Depending on how your anxiety and sensory sensitivity levels are on a given day, the speed of overwhelm occurring differs. If your levels are high; overwhelm will occur much more quickly than if your levels are low.
If you are unable to self-regulate or decrease the overwhelm, then a meltdown can occur. Meltdowns are often mistaken for tantrums in children as they will throw themselves around, scream, cry or lash out much like they would during a tantrum. The big difference between the two is the cause of the outburst. A tantrum often occurs because a child is not getting their way whereas a meltdown happens because the child is so overwhelmed that the fight or flight response has kicked in and they have not been able to self-regulate to calm themselves or be removed from the stimuli. It’s a desperate, anxiety ridden experience and the child or adult suffering through it has little to no control over how they are feeling at that moment because their survival instinct of fight or flight is in overdrive.
I recently experienced a meltdown, a relatively mild one and it was an exceptionally frightening and distressing experience. I was overwhelmed and was unable to remove myself from the overwhelming stimuli. I was stimming to try to self-regulate but it wasn’t working.
Suddenly it felt like the walls were closing in on me. My head was spinning, I couldn’t think straight,I started hyperventilating and I could barely talk. I felt completely helpless to these feelings and I just wanted to climb out of my skin and run away as fast as I could. I sobbed and had no idea why. I had no feeling of panic but it felt like my whole body and mind were screaming, though I couldn’t understand what they wanted or how to make it better.
It was a sobering experience as it reminded me first hand of what my son and all other autisticchildren and adult’s experience. It feels nothing like a tantrum when you are living that moment yourself.
Once overwhelm or a meltdown has passed, the person who has experienced it often feels completely drained of energy. An accompanying headache is also common as is the lingering feeling that everything they are experiencing is too much for them to handle. They often need to hide away from the world to allow their sensory system levels to return to a much lower state before they can attempt to be exposed to any overwhelming stimuli again.
There is a phrase in the autistic world which is ‘social hangover’. This is when the autistic has socialised and, although they may not have reached a high state of overwhelm or meltdown, they need to rest and give themselves self-care in order to recover from the social event. It feels very much like a sensory hangover.
There are different techniques and apparatus that can be used to help calm a person who is experiencing overwhelm or a meltdown; a dark, quiet room with a light projector (that projects swirling colours or an image on the ceiling or wall) helps as it removes most of the stimuli from the outside world and watching the peaceful, flowing lights or colours helps.
Other good tools are bubble tubes or bubble walls; watching the bubbles float and bounce their way to the top of the tube or wall is very calming.
Another commonly used tool is noise reducing headphones or ear plugs that will greatly decrease the level of auditory sensory input that they are experiencing.
One thing is imperative; NEVER, unless there is literally no other option available, ever restrain an autistic whilst they are in a state of fight or flight, in overwhelm, in meltdown or any other time, to be honest.
One thing that is very very common in autistics is that we abhor being restrained or held against our will. All this will achieve is causing a great deal more stress, anxiety and overwhelm to the individual and if they are not already in meltdown; this is a sure fire way of causing them to meltdown.
One technique that is very effective, I have found with my son, is using a sensory diet at home as well as seeing an occupational sensory therapist once a week.
With this, the individual does specific exercises or activities that reduce and calm their sensory system. If this is done every day; especially before a social event or a situation where they will be exposed to overwhelming stimuli, it will enable them to be able to cope for longer and will lengthen the time that overwhelm takes to occur.
Living with hypersensitivity can be hard and it can greatly limit the options you have when planning activities, social events or even a trip to the shops. However; there are many wonderful benefits to living with hypersensitivity. If it is in your visual sensory system, you can get lost in the beauty in the world; such as trees, art work, sunsets etc. If it is auditory, you can find true joy in music or be able to hear a greater distance with clarity. With taste you can pick up even the lightest ingredient in a meal. You get my point.
As with most things in life, there is a balance; the Yin and Yang so to speak. When you experience the world with sensory intensity, you have both the ability to feel ecstatic joy at the simplest things as well as be crushed by overwhelm.
I, personally, would not want my sensory sensitivities to be dulled or reduced. A walk in the forest brings me such peace and happiness; simply by looking at the trees and the different shades of green in their leaves, the fresh scent of the woodland and listening to the birds and squirrels living their lives; it’s a magical experience that I would never want to be without.
So please do not focus on the negatives. Yes, they can have a big impact on your or your loved one’s life. But the negatives can be lessened with techniques or tools. They can be supported by knowing situations or stimuli to avoid, by using a sensory diet or using items that you can transport with you such as noise reducing headphones or tactile toys (like Squishies etc.).
The thing to focus on is the happiness it can bring; go to the places or have the experiences that bring you joy and comfort. Celebrate the things that you can feel that the majority of the population cannot and do self-care activities often to keep your sensory system calm.
For other useful resources visit our blog.
By Jo Richardson
Being an autistic woman is not easy. Especially when you are un-diagnosed, self-diagnosed or have been diagnosed later on in life.
A large attributing factor to the difficulty is the fact that you have grown up knowing that you are different; struggling to fit in, sometimes rejecting society and not wanting to fit in, trying to understand social communication, romantic advancements, verbal communication and often being shunned or rejected by neuro typical women because you are different to them and viewed as either broken or a threat.
I have spent my life on the outside; believing with every fibre of my being that there was something very wrong with me as I just didn’t understand my peers. I didn’t understand how to make friends,or how I was meant to act in order to keep friends. I didn’t understand why I was bullied so harshly throughout my school life; why there was this invisible target on my back that other people seemed to be able to see but I couldn’t. I felt like an alien trapped on a planet with a species that I couldn’t relate to or fit in with, no matter how hard I tried.
Because of this I have suffered, for 29 years, with mental health issues.
I started anti-depressants when I was eleven because I felt like I was deficient and everything was too hard for me to cope with.
Throughout my school years, my aim was just to survive it.
When I went to college, I found a group of people that were all different from the rest of our peers. The outcasts, rejects and rebels of the world. For the first time, I felt like I belonged somewhere. However, with hormones kicking in to full blast, my ability to cope with my own intense emotions that I couldn’t understand or identify (let alone other people’s) was badly floored and I spiralled dangerously out of control; bouncing from relationship to relationship, getting into dangerous situations without realising they were dangerous. Although I had found people that I could finally relate to, I still didn’t understand them, their motivations, intentions or what they wanted from me so I just followed their lead and went along with anything that they suggested.
By the time I was eighteen I had left my family home and I had my first breakdown. I was arrested and charged with (car) insurance fraud as I couldn’t deal with the responsibility of being an adult and running my own life. Thankfully, I did not serve any time as my doctor had written a letter stating that I was currently suffering from five different mental illnesses; classifying me as clinically insane and, therefore, ill-equipped to be able to handle going to prison. I served a suspended sentence that I did not understand.
At this point I was diagnosed with severe anxiety, clinical depression, borderline personality disorder, obsessive compulsive disorder and avoidant personality disorder.
I was eighteen.
Unbeknownst to my doctor at the time or I, I was actually a severely depressed autistic with OCD.
The depression and severe anxiety caused by the fact that I thought there was something wrong with me, that I couldn’t understand the world and that my peers either shunned, bullied or abused me.
I spent my whole life trying to fit in and appear ‘normal’. It was only when I was diagnosed that most of the pieces fell into place for me.
I was lucky – I was able to get diagnosed; albeit much later in life than was mentally healthy for me. For autistic women who are not diagnosed and have mental health issues, the prognosis is far worse.
If you are unable to be able to cope with making phone calls, that you don’t understand the support systems or how to ask for help, that the forms are too confusing to complete or that your demand avoidance is so high that you hide away from trying to get help, there is currently very little support out there to guide you through. You are left to cope on your own and many female autistics, at some point in their lives, have self-medicated with alcohol or drugs, just to try to stop what they are feeling.
The experiences that I have heard from other autistics of their time spent trying to get support or help or have spent time in psychiatric facilities makes my blood run cold.
Phrases that I have heard autistics describe their experiences in the Mental Health system are;“Scary and overwhelming”
“I just didn’t understand what they were asking me”
“They didn’t understand that I was overwhelmed and shutdown”
“They didn’t listen to me. They ignored me telling them that I believed I was autistic and kept saying that my impairments were caused by mental illness; not autism”
These aren’t phrases that suggest the help and support that should be given within the Mental Health system.
A big problem in this country (UK) is that a vast percentage of the mental health medical society still does not understand that there are fundamental differences in the characteristics of female and male autistics.
Therefore, when they are dealing with a female (un-diagnosed) autistic who doesn’t display the male characteristics associated with an autism diagnosis, the most common diagnosis that seems to be given is borderline personality disorder which, although it does share a small number of characteristics with female autism, is completely different in the way that the woman’s brain is wired, how she thinks and how she behaves- the motivations and reasons for the behaviour or actions of the woman.
The terms ‘manipulative’ and ‘self-serving’ are often used and they are given medication used to treat BPD but does nothing to actually help relieve the mental health issues that they are experiencing.
It seems to be a common experience of autistics who, when they sit in psychiatrists offices, feel lost, anxious and overwhelmed while being asked open questions that are not specific enough to be understood by the autistic patient, leading them to be labelled as ‘difficult’ or ‘not trying hard enough’ when the patient wants to be open and honest and to answer the question, but simply doesn’t understand the question enough to do so.
Their specific autistic needs are neither acknowledged or supported, such as their sensory needs, if their processing speed is slow, overwhelm, autistic shutdown or if they have great difficulty understanding verbal communication.
Then they are released back into the world without the support and help that they struggled so hard to ask for.
This is a system that desperately needs to be fixed. It is failing so many autistic women simply because they do not have the training or education in female autism to be able to identify it.
They go through their standard tick list of characteristics and symptoms (that doesn’t include female autism) and diagnose with the label that fits the most ticks; regardless if some of those ticks are actually characteristics of female autism. Without recognising that the patient is autistic, those characteristics muddy the mental health diagnosis waters, often leading to an incorrect diagnosis and, therefore, treatment. As a by-product of misdiagnosing because of the female autism characteristics, the true mental health issue can be missed or ignored as only certain aspects of it fit the incorrect diagnosis (making it the diagnosis with the most ticks).
By increasing awareness, knowledge and understanding of female autism, we can help women such as those who suffer under the Mental Health system or those who think there is something wrong with them but have only heard about the male characteristics of autism.
There are fantastic female autistic role models and advocates out there. Just two of many are Sarah Henderickx – the leading specialist in female autism in the UK who is also autistic herself and Greta Thunberg – an incredible autistic sixteen year old who is challenging understanding of climate change on the world stage, have many videos on YouTube that are phenomenal and need to be seen by as many people as possible to raise awareness and understanding of female autistics.
Together we can make a positive change for autistic women everywhere and the world as a whole for our children and our children’s children because, lord knows, it needs to be changed.
By Jo Richardson
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Hello my name is Hazel and I was diagnosed with autism when I was 15. My story doesn’t have the best start from being deemed a ‘dumb’ child and found it difficult to make friends my own age. When I transitioned to secondary school it was tough. I couldn’t settle in and got bulled because I was different. I became so unhappy with school that I would fake stomach aches to stay at home. It got to the point where my attendance was down to 85%.
I was determined to fit in and decided to change my physical appearance to do this. I started dieting which turned into me starving myself. My parents sent me to CAMHS, the child adolescent mental health service. I was diagnosed with anorexia and spent 10 days in hospital.
After leaving hospital, the months that followed got worse. I couldn’t attend school and got angry at myself. Spending time at home got too much for me and I was sent to a psychiatric ward where I spent 10 weeks building myself back up again. When I left I started preparing myself to go back to school. I still found eating a challenge but I was finally on the road to recovery.
In 2013 I started back at school part time. Doctors were investigating my eating disorder and toyed with the idea that I might be autistic. By late 2013 I was diagnosed with ASD. I wasn’t surprised at all as it explained why I did certain things. My school were informed and I was moved to a SEN department. I received one to one help with my GCSE’s and concentrated getting 5 ‘C’ GCSE’s to get to college. At college I was able to make it to the higher course for art and design and really enjoyed it there.
When I left college I got my first job as a seasonal sales assistant at a retail store. My first day was on the busiest retail day of the year, black Friday. I’d had no training apart from a 10 second demonstration on how to use the tills. It was so busy so I was unable to ask for help from anyone, including managers and colleagues. I had to figure out how to use the till and do the role on my own. As well as this, the queues were building up, which meant customers were often rude and impatient. I felt invisible and that everyone viewed me as a ‘lower human’. I quit after just 4 days.
My second job was with a fabric sample business. The hours were long and the job was very repetitive. It got to the point where I asked management for a different task and they said no. It felt like the walls were closing in around me, as the building had little light, no windows and I was completing the same tasks day in day out. This led to a breakdown at work and I asked the manager if I could have a 5 minute breather outside which is when my manager became angry telling me I didn’t want to do my job and I was ‘slacking off’. It was almost like I was a young child being told off by their Mother. I was able to speak to another manager where I was able to explain why I was in such a state. He was empathetic as no one had told him about this, and let me go home. He said he would keep the job open if I wanted to go back, to which I didn’t.
My third job a seasonal job at a resort. I went along to an audition and felt very out of place. Despite this, I got the job and was given a chance. The long hours and requirements of the role took its toll on me. I had breakdowns every day and found it really tough. However, the staff tried their best to support me as much as possible which was really refreshing, as no other employer had given me a chance before. I was then moved to a customer service role which put much less pressure on me. I was able to work with customers with ease and it felt more natural. I had no breakdowns and really enjoyed it. Everyone I worked with was really nice and empathetic. I left there with a more positive view on my abilities and motivated to do a more creative job.
Despite my experiences, I now feel like I understand myself better. I have a passion for theatrical makeup and have been doing makeup for 5 years. It started because I hated my appearance, but turned into a love for treating my face like a colouring book and expressing myself. I’m able to create makeup looks that represent certain things, and recently completed a look to channel my emotions that helped me gain confidence to be myself. Id love to make this my career.
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