I’ve been planning to write this blog post for many months but I waited until I had completely recovered from my regression to save people from saying ‘you’re just making excuses’ or ‘you’re really not that disabled.’ And of course, I am not, no longer…well, I had recovered to a degree and then went through a third regression but knew that I had to take a stand back and really work out what I should do before this got any worse. And although I’m not fully recovered from the second regression; I feel that some of those things that have happened are with me for life.
I call it ‘the second regression’ after autistic regression that happens for some of us between the ages of fifteen and thirty months after we typically develop as babies, may have some speech and desire for attention but then we quickly or slowly lose those skills. Many parents think that this is because of the MMR vaccine because it is usually given to their child around this time and I’m not here to argue with that.
This is a very sensitive subject and one not known by parents of autistic children or doctors, but it must be known because when it happens to an autistic person hardly anyone would believe them because things they were capable of doing they no longer are, or struggle with it, and it makes one feel very lonely when someone thinks you are capable of something when you’re not.
The second regression affects to my knowledge only those who are high functioning (as much as some people with ASD find that word insulting you’re just going to have to bear with me because I can’t find another word in which to describe it – you rather I called it ‘mild autism’?) or have awareness and have some level of independence because this regression happens commonly when an autistic person pushes themselves even though they are well aware of their limits into a much more stressful territory. The stress may be so severe it triggers seizures or what we on the spectrum call shutdowns, which is a temporary mental and physical shutdown; physical usually precedes mental or may be different in each person that goes through the ordeal. The regression happens when these shutdowns happen frequently over weeks or months.
This is my own uncensored account of my second regression:
Aged 24, diagnosed 6 months prior with ADHD and given Ritalin to decrease some of those symptoms. I started on 5mg and slowly went up to about 20mg a day and on doctor’s orders went up to 30mg a day; the legal adult limit in Australia. My weight had dramatically dropped and I was finding it hard to eat. I used to flap my hands to help me eat. It worked to a point but I was still losing weight. I got right down to 49kg (108lbs) and developed a type of hypoglycaemia where I would grow weak and dizzy if I didn’t eat every three or so hours. This by outsiders was seen as me needing to eat at certain times as a part of my routine and I almost believed it myself, until I almost fainted on my desk when my half made sandwich was on the kitchen counter when I was rushed from the kitchen while my mum dealt with someone doing some type of renovations or something. The details are a bit fuzzy.
One of my most crippling symptoms has been my fear of change. Written down it sounds almost ridiculous but I know just what it used to do to me. I would snap, sometimes explode, panic and become immensely worried as I would create every possible doomsday scenario in my mind of what could happen. As a child my fear of change was so severe I would have a meltdown, back then seen as a tantrum. It could have been slight changes in routine to dramatic changes like going to a place I’ve never been to before. I’ve written an article about the levels of change and will leave a link at the bottom of this blog.
Being aware of this fear of going to a new area made me very reluctant if not oppositional to go to new areas, like a town I’ve never been to before. Once I was offered to photograph a festival on the border of NSW and Queensland. Naturally I panicked and said I wouldn’t go and was yelled at by my mum for not trying new things. I had tried to overcome this fear; I even looked up bus routes and hotels to stay at when planning to go to another show in another town but decided to not go. I was a self-employed band photographer being asked by various bands to take photos of them in towns I’ve never heard of before. I did go when the location wasn’t too far away. Sometimes I did so without planning how to get back and once my brother Vishnu had to drive all the way to Camden to pick me up with my very ill dad in the car.
I was reluctant to go to more shows too since my over exposure to strobe lights resulted in the biggest public meltdown I’ve ever had since I was about eight years old.
My friends and I love this band called You Am I and always try our hardest to see them whenever and wherever they play. There is usually a big gap in between the time we see them play and I think that was a reason why I pushed myself to go see them in Castle Hill. I was so worried about going that I looked for pictures of the venue online and even looked at the route from Wollongong to Castle Hill.
A few weeks before the gig I was noticing for the first time my senses becoming more easily overloaded when I walked the half hour walk into town. It wasn’t anxiety, it was the opposite; I felt light headed and though people were around me it didn’t feel like it. On the actual night of the show I was stumbling around like I was drunk even though I hadn’t had any alcohol. I had barely eaten dinner because of my loss of appetite and around this time I was medicating myself into social competence. The Ritalin helped me talk more to people but for some reason didn’t work when I went to see bands live. The mixture of Ritalin and alcohol (a most potent mix, one that I strongly recommend against) was my form of self-medication to help me socialise. It was a foolish decision to make, what was even more foolish is that I took up to 30mg that night.
I was aware that strobe lights would lead to another meltdown so I planned to leave after three songs; the usual required length of time media photographers are given to take photos and the rule only applied to me by You Am I’s road manager, regardless of venue size. And after three songs I put away the camera and went to the back of the venue, where I still had sensory overload and became very hyperactive.
Then we got to see the band backstage which I was very nervous about. I have no idea why because I’ve seen them before. I was just very tired and hungry and sober and for the rest of the night gave vague replies, couldn’t participate in a conversation and the only thing I did say ended up embarrassing me.
The next day at the train station I thought I saw waves in sky. This was my first visual hallucination. When I returned home I wanted to work on the photos immediately but I felt tired so I took Ritalin, fish oil and a multi vitamin but it wasn’t enough so I decided to have a quick lie down on my bed, but then I got stuck in a loop of the same negative thought about the very thing that embarrassed me. I barely had any feeling for it anymore but it still looped in my head, and then I couldn’t move; only my legged jerked once or twice and I couldn’t speak. I lost a good hour too though I didn’t feel the time pass. When I finally could move I went to the mirror and saw that my right eye was bulging and that side of my face was drooping.
This was the beginning of my seizures and soon was accompanied by more jerking movements, automatisms which is like repetitively doing an action; like autistic stimming but very hard to control, and a partial paralysis called Todd’s paralysis; the fatigue that follows a seizure. Soon I began smelling things and seeing things and hearing things, though what I heard was short an incomprehensible and sometimes what I saw lasted only a second and sometimes it would be more vivid and I could actually feel it, as one feels things just by looking at it. This went on every day for weeks until I realised it could be Ritalin that was doing it. My appetite loss was getting out of hand too. I became very hungry to the point of feeling ill and weak but I still couldn’t eat, and once at my niece’s first birthday party in which it was a sweltering hot day and my glasses frames had just broken and I felt weak and knew I’d have a seizure at any moment, I had very severe partial seizures and a temporal lobe episode/ meltdown but was denied when I came clean about what was happening, even when I said my symptoms were getting worse. Not only did my mum not believe me but my doctor doubted Ritalin could be the culprit. I soon learned to keep my mouth shut and hide the seizures. I started to have migraines after them too (never before did I even know what a migraine felt like) and I was at least believed about that. The seizures continued throughout Christmas 2010where I still kept them hidden but was thinking about them constantly and after getting foolishly drunk with my sister and her bringing me to tears, in the morning I had a cluster of seizures. They were now tonic clonic without a loss of consciousness.
Around this time the cognitive regression was starting too. People would give me an order and I would stop still and ask ‘what do you mean by that?’ and wasn’t able to say much more. The instructions would have been easy enough to understand before but now they were confusing and I was taking words far more literally. One example is when I wanted to go into a store and my mum said I could leave my bag in the car if I like, so when it came to the point of buying something I told her my purse was in the car, and she laughed and said ‘why did you do that for?’ which I replied ‘you told me to put my bag in the car.’
I’ve made many literal interpretations like that ever since. Another thing that happened was I was too scared to go onto my little half hour walks into town, when I finally did I noticed my hand would shake as soon as I got into a public area and I became sensory overloaded. For a long time I started having visual distortions around town which still happens to this day but is so common now that it barely concerns me. They’re now closer to vivid hallucinations like ever before. Shopping centres regularly turn into elaborate scenes from futuristic sci-fi and busy cities turn into war zones, even my own street turns into a stampede of ravenous T-Rex’s.
I began to struggle to hold back meltdowns and would have them over things as simple as the fact it was raining. I started to blame people for not realising that something was a part of my routine which had to be followed if I wasn’t to have another meltdown or just stop and sit and not know what to do next. I began to lose my spatial ability and though every passing car that passed the car I was in would collide with it and my timing to cross the road was poor. I could no longer judge how long it would take a car to pass and me to cross. I developed a fear of crossing roads and demanded anyone happening to walk with me to cross at pedestrian crossings.
Needless to say I didn’t see any live bands during this time. Because of the increase in sensory sensitivity I communicated less to people because I would lose the ability to even look at them so quickly. Sitting in cafes was an absolute nightmare which I eventually banned myself from. I got really angry once that I didn’t receive my meal at twelve o’clock, but most of the time it was the ear splitting background noise that set me off. In supermarkets I would become dizzy, hyperactive or try my hardest to not have a meltdown I would have a shutdown and regress temporarily in walking and speech while still in the supermarket.
My social withdrawal meant a loss in the social skills I developed in those two years since I was diagnosed. I had to learn it all again from social niceties to remembering to not be so blunt to trying to decode tone of voice to reciting what various body languages meant, but I was never good at remembering those.
The seizures continued even without medication and my memory was becoming poorer and it was harder to stay organised. I wasn’t writing at all because I barely got a page out when attempting to write my novel without medication. I decided to go back on medication on the lowest possible dose and it works for me. I get three-four hours of increased focus and all the other pleasures that come from this drug and I only take it twice a day. Sometimes I try 5mg more and some days I struggle to take the first 5mg dose if it’s close to a holiday or I’m around a lot of people (I forget, basically). It does help with social skills but even on the low dose I get side effects, but it also decreases sensory issues. I can just tell when I walk down the street the difference in focus. The lack of focus actually saves me from much social anxiety and migraines. If I wasn’t on Ritalin I wouldn’t be able to write my novel (and therefore have very little to live for) and would have very poor reading comprehension.
My third regression happened after I moved to Sydney. Not only did I have constant meltdowns about moving things from boxes to not knowing what to do with the empty boxes to not having my clothes or most of my stuff to social anxiety in the streets (as soon as I left the front gate) and struggling to create a new routine, but because I was so busy I kept having breakdowns (kind of a combined meltdown-shutdown) and soon I was becoming so burned out I couldn’t make myself food and was too sacred to buy groceries and some days would panic over not knowing what meal to make. And then the criticisms came: you’re not exercising/ eaten healthy/ socialising enough. And then came more cognitive regression and although people around me didn’t like using diagnostic labels they sure treated me like someone who had one. In fact, it was all repeating again; the very simple instructions, the nurturing, the speaking for me. I knew I had to take a very long break from all of this otherwise I’d get worse.
Once again Ritalin was the culprit of the anxiety and migraines. I found that out when I went grocery shopping on Saturday and was fine. My senses were extremely overloaded that I used the street crossing as an aide to help me walk across the road without getting hit by a car, but I had less anxiety…and focus. It was like watching a video where the cameraman quickly moved the camera from side to side, up and down, and zooms right in on street signs and display windows.
There are many stories like mine where someone with autism who was once very capable had lost most of those skills because they pushed themselves so much or were pushed by other people. I didn’t want to share this with parents who spend all that time and money to help their children develop skills. I don’t want parents to stop helping their autistic children develop new skills but I want them and doctors and other people who aren’t aware to know that just because someone with autism develops more skills it doesn’t mean they won’t lose them. Not everyone does lose them and some that lose them don’t completely regress and may recover, though some may be unlucky; I know someone who now has severe communication problems because of the regression.
For an adult it’s harder to go through the regression because so many people have seen you functioning at a level you may now struggle to reach. For those who are parents and work it must be more devastating because of the level of responsibility they have.
It can be avoidable. Autistic people must know their limits and not push themselves too hard. They must pace themselves and not work until exhaustion. The consequences can be life changing and not for the better and the recovery process is long and some skills may be gone for good. The health issues I have are there for good, the higher mental functions can be worked on. My increased fear and paranoia that I haven’t even touched on may be harder to overcome (demons in room at night/ fear of everything at night), even the anger outbursts have become harder to control. I’ve recovered up to a point where I say ‘This is fine. I may never get those skills back and I’m fine with that. I am healthy and have been given a second chance after my second and third regressions.’ May there never be a fourth.
I know there are some people who have more severe autism than me and some may never recover, but I ask you this: imagine if they could speak and take care of their basic needs. Now imagine they lost all of that obvious stimming behaviour and started to socialise with people more and it got harder and harder to know they were autistic by what behaviour they had. Socialising isn’t all fun and games; it’s a brutal game of popularity and conformity. If you are slightly out of the mould of someone’s perception as a ‘normal person’ you will get out casted, ridiculed or worse kept in the group but were teased constantly. And most of us can not pick up on sarcasm and some of us get really offended over playful teasing. With an increased awareness at knowing how different you are comes anxiety and with this awareness and acquired skills comes more responsibility but you still have sensory issues, fear of change, need for routine, explosive meltdowns and have all your repetitive behaviour seen as weird by non-autistic people or people that don’t have an open mind to it. You have people doubting your impairments or even your diagnosis so you try to keep it to yourself but it all becomes so overwhelming. Depression can be developed or other personality disorders. You get judged by employers on your social skills and not the skills they actually require and you’ll be unemployed for a long time if you don’t have experience in IT, especially programming.
And you think high functioning means we have it easier? No. No one with autism, no matter what end of the spectrum they’re on, have it easier. There’s always going to be difficulties in different ways that feel pretty damn severe to those experiencing them.
A person that is high functioning is not always. For some of us we have a small window open where we have the mental ability and physical energy and drive to be organised, work on social skills and do very basic everyday things but we get drained of this early and if we don’t allow ourselves some time for rest then our functioning will become lower, but we have to keep it to ourselves because we’re not supposed to have those types of severe symptoms. I’ve been partially paralysed more times than I can count on both fingers and toes. I could probably count on both fingers the many times I’ve lost speech. My cognitive functioning has been slowed down so many times and so severely that I’ve barely been able to think one coherent sentence when it happens. I lose my ability to write only after a few hours of writing and my thinking slows down too.
One difference between severe autism and high functioning autism is the latter have to deal with this alone because people, no matter how much they want to help, just don’t understand temporary and long term regression and how it can happen to someone with HFA or Asperger’s or even PDD who one day is functioning at an almost NT level, to not being able to look at you or move their arms or speak or even feel emotions, a few hours later.
Parents with children on the severe end of the spectrum: I really don’t wish to offend. I can empathise with your struggles but just don’t think because it doesn’t say ‘severe’ or even ‘autistic disorder’ on my medical file it doesn’t mean that I don’t struggle as much, it also doesn’t mean that someone who has milder symptoms than me struggles any less. It took me a very long time to understand that. I too tire of people focusing on the positive side of autism and the media’s focus on those who are gifted. This disorder has halted my development so much, especially because when I was growing up hardly anyone got diagnosed with high functioning autism, and I needed to be diagnosed with something because I felt people had no hope in me and I was not verbally gifted or a little professor. I was just as aloof and distant as someone with classic autism. In the three years since my diagnosis I made a lot of improvements, lost some skills, gained them back and now live almost independently. They are many challenges that still lie ahead, like going to new areas on my own and getting a job and travelling on a plane. In fact the latter fills me with a lot of panic.
That said I do see some strengths in my disorder. I can make routines more functional, special interests into career moves, my own story into advocacy and my attention to detail and relationship with colours into an original art style.
The autistic community is divided by disagreements over causes, accusations of ‘you’re not severe enough’ to ‘I don’t want to have anything to do with those r*****.’ We need to stop taking things so personally and just allow the abuse of other to wash over us, go away for a while if you must. Honestly, I have a disorder which triggers a need to argue (even when I agree) and find conflict and I’m pretty good at staying rational in an argument (online – offline I just stay quiet). My other disorder makes me want to be in control of a situation and be pathologically avoidant. This community needs to remember there is a full spectrum and that even within each group people can be very different. We need to band together and approach self-advocacy by not leaving anyone out and not focusing too much on positive and negative – but to have a balance between them both.
Links:
Why do Autistics Hate Change?
http://www.autismhwy.com/articledetails.php?id=77
A Health Crisis on Christmas (during regression – I kept this hidden for over a year)
http://www.addforums.com/forums/blog.php?b=2394
If you would like to add your own link about regression in autistic adults please leave the link in a comment.
