My eldest child, Emma (nine-years-old), had her first anxiety attack when she was just four-years-old. At the time we didn’t know it was an anxiety attack but she’s had many more since then and we now know that that’s what it was. We had spent a lovely day at the park collecting conkers for an arts and crafts activity when she suddenly started feeling dizzy and complaining that she felt sick. She went very pale and started to shake so we took her home where she sat, subdued, on the sofa refusing to move, talk or eat. By that evening she was back to her old self again. The same thing happened again a few days later…and then again and again and again…
Emma was very interested in me writing this blog and wanted to help out by explaining how she feels when she has an anxiety attack. She has told me in the past that it makes her brain feel “fizzy” and as if she has no control over it or her emotions. Today she told me that when she is at the start of an anxiety attack it “feels like my brain is laughing at me and calling me fat and ugly. It feels really horrible and bad; like I don’t know what’s happening. Sometimes it feels like my brain is big and screaming and swearing at me.”
Over the years, with the help of Emma herself, others who suffer from anxiety or help those who suffer from it and advice from doctors and other healthcare professionals we have devised a number of ways to help Emma deal with her anxiety and I’m going to write about a few of them in the hopes that it may help other families who are just learning about anxiety.
The most important step in helping Emma manage her anxiety was her recognising, for herself, when she was feeling anxious. This is no easy task for a child and it took her a long time to realise that when she felt sick it didn’t instantly mean “bug” or “food poisoning” but it could also mean “anxiety alert!”. Emma has emetophobia which means that an anxiety attack for her is a double whammy because it makes her feel sick, which makes her anxious, which makes her feel sick…it’s a rather depressing spiral.
Once we realised Emma had anxiety we bought her a book recommended by a parent on a Facebook page, the book is called Starving the Anxiety Gremlin and is a CBT workbook aimed at children to help them identify and overcome their anxiety. Emma has really enjoyed filling in her book and it’s helped her understand her anxiety a lot more. The book introduces the concept of an “anxiety gremlin” to separate the anxiety from the child. This gremlin is “fed” by unhelpful behaviours such as self-harm but is starved when the anxious child seeks help from an adult or practices calming techniques when feeling anxious. It’s a great book which explains the evolutionary purpose of anxiety and doesn’t encourage the child to suppress or hide their anxiety but to face and not allow it to assert dominance over their lives. It helps the child feel in control of their own emotions and anxiety.
Now that Emma is better able to recognise an anxiety attack before it really begins she is able to tell us that she’s feeling anxious (she uses a codeword “Lobster” to tell us she’s feeling anxious because saying the word “anxiety” makes her feel anxious!) and then we can help her calm down or encourage her to calm herself. Once Emma says, “Lobster” to me, I ask her if she needs my help. Sometimes she will say no and take herself off with her ear-defenders and blanket to hide in her tent with her sensory box or to do some drawing. Other times she will say yes and I’ll help her by giving her a tight cuddle, talking to her or just be sitting near her until she feels calm, whichever one she thinks will be most helpful.
Usually, after an anxiety attack, Emma feels exhausted and needs to be left alone to recharge her batteries. She often does this by drawing, she is a very talented artist and finds drawing very relaxing and soothing.
Emma has attended relaxation classes aimed at children, we found a group called Relax Kids which ran the sessions and in these classes, she learned some wonderful coping mechanisms for when her anxiety is getting on top of her. They teach breathing techniques and other meditation exercises, as well as promoting good self-esteem and mental wellness. Emma’s favourite takeaway from these sessions is what she calls “cat breathing”. She arches her back and flexes her hands and feet like a cat and then relaxes as she takes a deep breath in and “purrs” as she breathes out. Sometimes while doing this she asks me to firmly stroke her head and back, sometimes she prefers to be left alone.
Without the stress of school, Emma’s anxiety has decreased greatly all by itself but the techniques described above have also gone a long way towards helping Emma and now, although she still feels anxious fairly regularly, she very rarely self-harms or feels suicidal because of it. She is much more in control of her anxiety instead of it being the other way around and is able to deal with her emotions in a very healthy and mature way. When I see Emma battling her “anxiety gremlin” I am incredibly proud of her, she handles her emotions better than many adults!
Despite increased understanding and acceptance of autism, there are still people (mostly neurotypical) who push for a “cure”. Most people on the spectrum do not want a cure; they are happy being who they are, those who do want a cure often do because of a lifetime of being made to feel inadequate by the neurotypical people in their lives who profess to love them.
What is ABA? ABA (or Applied Behaviour Analysis) uses positive reinforcement (and sometimes punishment) to reinforce what it sees as “good” behaviours, whilst eliminating “bad” behaviours. Advocates of it tote it as an autism “cure” or “treatment”. They claim its use can bring “meaningful and positive change in behaviour.”
It is a very intensive “therapy” and often requires the “patient” (read “victim”) to undergo a gruelling 40-hours per week of “therapy” in order for it to work. For many people, alarm bells should be ringing loudly right now that any child should be expected to spend 40-hours per week going through intensive behaviour modification but, unfortunately, many parents believe the lies spread by advocates of ABA and certain “autism charities” and truly believe that they’re doing the right thing and that putting their child through ABA is done out of pure love, in the hopes of transforming their poor, lost autistic child into a “real person”.
So, what’s the problem?
The largest problem is that these sessions do not cure autism at all, what they do, in fact, is teach the child to mask their autistic behaviour so that, to a neurotypical outsider, they appear to be magically cured of their “evil” autism. But these children are not “cured” or “doing fine”, they, like the proverbial swan, may appear to be gliding through life but beneath the surface they are paddling furiously, internally chanting horrible mantras such as, “calm hands!” to remind themselves not to stim lest the unseemly sight of hand-flapping upsets the delicate sensibilities of any unfortunate neurotypical people lingering nearby.
Hopefully you can hear the sarcasm dripping off many of the words used in the above text by my use of inverted commas but, if not, please let me clarify: autism is not evil, it is not some beast which snatches children away from their families in the middle of the night and it is certainly not a disease to be cured. Autism, like all neurodiversities, is merely a difference in the way an individual thinks and experiences the world. People with autism are not puzzles to be solved or burdens to their families; they are people who have every right to live as themselves without being forced to act differently just to avoid offending some person who can’t see the world from the perspective of anybody but neurotypical people.
Many autistic adults who were forced to go through ABA or other “behavioural therapies” as children have grown up with conditions such as PTSD as a direct result of ABA and being forced to mask.
I’ve been lucky enough to have very accepting, loving parents, so I was never subjected to the horrors of ABA. I’ve read about it though and have friends who have had their lives destroyed by it. In order to write this article, I have read through many articles, both by parents who think they can “cure” their child and by autistic adults who were put through ABA as children. Below I would like to address some of the issues raised in the things I have read.
But, autism is “bad”!
Seriously, I’ve seen this postulation posted in one way or another on many different forums and groups when I’ve tried to explain that autism just is what it is and, just like being neurotypical, it is neither good nor bad. The trouble is that people often confuse autism with the comorbid conditions that can go hand-in-hand with it (anxiety, depression, OCD and a plethora of sleep conditions, to name a few). The issue here is that many of these problems are a direct result of desperately trying to fit into a neurotypical world which is not friendly towards neurodiversity. Other comorbid conditions (sensory issues, gender dysphoria and so-called “learning difficulties”) wouldn’t seem so prominent if the world were more autism-friendly. Just as a deaf person need not feel disabled if only everybody could use sign-language, an autistic person need not have a hard time if the world was willing to make small compromises for them. To address sensory issues alone and how hard a place the world can be for autistic individuals, I will recount a story of a recent experience in our local bowling alley:
I had decided to take my children bowling, all three were very excited at the prospect of a fun day out.
When we arrived at the alley, disaster struck. I had forgotten just how awful those places can be for a person who is sensory-avoidant as my eldest child and I are. Bright, flashing lights; nasty-sounding, flickering fluorescent lights; booming music; loud noises; strange smells: the place was awful! My eldest child had one go at bowling and couldn’t take any more. Her younger brother and sister were having a grand time though so leaving wasn’t really fair on them. I bought my daughter a drink from the bar and suggested she sat on the balcony, away from the lights and noise (or so we thought) while the younger children and I finished our game as quickly as we could. As we stepped onto the balcony my poor daughter who usually tries to mask in public (despite me reinforcing that she should always be herself and honest about her feelings) was on the verge of a very large meltdown, we stepped outside expecting relief from the sensory onslaught but, no, outside there were still flashing lights and booming music. I re-entered the alley and asked a member of staff if she would mind turning the music down outside, I explained my daughter’s situation and thought she would be happy to oblige as it was mid-week during term-time, we were the only family using the bowling alley at the time and my daughter was the only person sat outside. Unfortunately, the staff member was not so accommodating as I’d hoped and refused to turn the music off or down. I tried to argue but it was futile so I went to apologise to my other children and to tell them we would have to leave as by this point Emma had started to shutdown in order to avoid a meltdown and I knew that the short-term psychological damage from a shutdown could last a week or more. At this point, the staff member sauntered over and informed me that she would turn the music off, but only for a little while. The way she said it made me feel as though she was deeply put-out by turning off the music and was doing me a huge favour. I wondered if I should get on my hands and knees and kiss her toes(!)
If the alley had simply turned off the music and lights for one session, my daughter need not have felt disabled that day. A shutdown could have been avoided and she would have been able to enjoy bowling with her family. Imagine a facility refusing to be wheelchair accessible, people would be up in arms! But because this is “just” autism, people assume the autistic individual should be able to “get over it” and cannot see how they are not being inclusive by having such a busy environment.
When I got home I wrote to the alley explaining what had occurred that day (I left out the staff member’s attitude as I didn’t want to get her in trouble) and asked them if they would please consider running autism-friendly sessions during their least busy period so that children like my daughter could enjoy their facilities. They failed to respond despite me sending another message a few weeks later. Please feel free to spam their Facebook page with pleas to change their mind.
“No person has been cured of autism and regrets it!”
Hmmm…well, the lady who posted this (I won’t link her blog) is half right I suppose: no person has ever been cured of autism! Those who were forced to go through behaviour modification therapy have been left with myriad mental health issues, but, hey! At least they don’t make their non-autistic counterparts uncomfortable by stimming and at least they can talk without using echolalia, who cares if they’ve attempted suicide multiple times because of what they’ve been put through, they can look you in the eye and talk about the weather(!)
“ABA is hard for me too! I hate seeing my child go through it but am doing it for their own good!”
This one is heartbreaking, these parents clearly love and care for their children very much, the suggestion that ABA is abusive is abhorrent to them, why would doctors suggest something harmful?! The problem is that many of the people who suggest ABA are not autistic and have never been subjected to it. ABA is taught in colleges and universities as a miracle cure and why should a doctor not believe what they are taught by their professor and why should a parent not believe what they are told by their doctor? This creates a vicious cycle of endless autistic people being put through harmful therapies under the name of progress with nobody really understanding what they’re doing wrong. ABA was first developed in the 1970s by Ivar Lovaas and Robert Koegel at UCLA, it was adapted from methods used by Dr Sidney W. Bijou in the 1960’s which he had formed using Skinner’s theories of operant conditioning. The reason I’m giving you this little history lesson is to point out that Skinner himself, who developed operant conditioning, eventually conceded that “punishment, unlike reinforcement, works to the disadvantage of both the punished organism and the punishing agency”.
Long story short, ABA does not work to “cure” anybody but can ultimately lead to the psychological destruction of the autistic individual. If you are a parent or carer, considering ABA for your loved one, I implore you to explore other options. Speak to autistic adults: both those who were put through ABA and those who were not; strive to understand your child more so you can see where behaviours you’re struggling with come from; look at other ways to help your child, including helping them to overcome any comorbid conditions (such as anxiety and depression) that may be affecting their behaviour and, above all, love them and empower them to be themselves and to be happy being themselves, don’t suppress their personality or coping mechanisms just to make other people comfortable.
We don’t need behaviour modification; we’re awesome!