Tag Archives: Staff

My Experience with Professional Support for Autism #Write31Days

Yesterday’s post in #Write31Days was somewhat inspired by the day 3 question on the 30 Days of Autism Acceptance. The day 4 question asks about family and support. I may have to split this topic into several posts, as it is about both family and professional support. Today, I will talk about professional support.

I have been in the care system for years. As a child, I was in special education. As a teen, I didn’t get much in the way of professional support, but I sought it back out right after high school by going to a rehabilitation center for the blind. I was still undiagnosed at this point and I don’t think the staff had an idea that I could be autistic.

When I moved to an independence training home after the rehabilitaton program, the staff got to know me better and got the idea that I may “suffer from” autism. That was how the coordinator called it when she wrote my request for services for once I’d be living independently. I hated that word, “suffer”, but I’ll get to that at some later point.

Initially, the reason my staff wanted me to be assessed for autism was to confirm they were on the right track with their support approach. Obviously they weren’t, as they kept switching approaches and expecting little from me one day, then deciding all my challenging behaivor was attention-seeking and leaving me pretty much to my own rsources the next.

I was diagnosed with autism in March of 2007 and started meeting with a community psychiatric nurse (CPN) in training in April. Her supervisor was a bit of a weirdo, barely having read my records and making his own assumptions about what was going on with me. He was the first to mention impulse control disorder, which I got to be diagnosed with along with autism a year later.

The CPN-in-training herself was great. She gave me lots of coping tools, even though I didn’t fully understand the necessity at first. Unfortunately, as I was moving cities to go to univeristy, I had to stop seeing her three months later.

After being hospitalized, my interactions with nurses and treatment providers were quite varied. I had favorite and not-so-favorite nurses on each unit I stayed on. Particularly, my named nurse on the resocialization unit was great. So was the head nurse at that unit, who acted as a step-in named nurse to me too.

What I found the most helpful in a nurse, was if they took the time to really look at my needs rather than at protocols. That was clearly what I missed most at the last unit I stayed on. “Borderlines need to take responsibility,” a nurse – who later became one of my favoirte nurses at that unit – told me when I requested reminders to do my personal care tasks. I know that it wasn’t just that most staff didn’t believe I’m autistic, since they treated another patient with a more established autism diagnosis in a similarly dismissive way.

Now that I’m home, I think most of my staff do a good job of balancing protocols, which of course they have to adhere to, with meeting my needs. For example, my current CPN just reassured me this afternoon that she validates my need to be in a sensory group at day activities. She didn’t even say it’s not in line with my intelligence level.

My home support and day activities staff are great. My husband says it’s a regional thing. It isn’t, because the other day activity place I checked out and the mental health agency’s home support team, both of which are in the same city where I get my day activites, weren’t as accommodating at all.

I’m Officially Home!: The Road to My Discharge from the Mental Institution

It’s official: I am home. Yesterday was my formal discharge date from the institution. It would’ve been May 1, but got delayed one week because I needed mroe time to make arrangements for my after care. Today, I’ll share my journey to getting the care I need and living in the house I want to live in with the man I want to live with.

Like I said, my original discharge date was May 1. However, a week before that, nothing had been arranged in the way of after care yet. I’d have my first appointment with a psychiatrist from the community treatment team that Friday, April 28. That was all my psychologist said she was required to do in terms of making sure I am in care once discharged. Apparently, she and the social worker had deliberately handed me the responsibility of making sure I’d have day activities and home support, only without telling me I had been handed that responsibility. I didn’t find out about this till April 26, when I had my “exit meeting”, as my psychologist called it. Call me a cynic, but I immediately thought of the Swiss end-of-life clinic by the name of Exit.

After my “etit meeting”, I was very much in distress. I called the patient advocacy person, but she couldn’t do anything for me, as I’d be in the community team’s hands. I called my husband, who was on the road. Desperate, I called my mother-in-law. She asked for my psychologist’s number and somehow convinced her to give me that extra week. It was suggested to me that all it’d take to make sure I’d have day activities was a phone call to the day activity place manager, who was on vacation during the last week of April and would be back May 2. It wasn’t exactly that simple, but in the end it was close to that simple indeed.

On April 28, I had my intake interview with the community treatment team psychiatrist and nurse practitioner. They were much more supportive than anyone in the institution had ever appeared to be upon first meeting them. I suspect this psychiatrist has never worked for a long-term care unit, as she was surprised I didn’t get any therapy there other than day activities. “But it’s a psychiatric hospital,” she said. There she nailed the reason I’ve called it an institution for years: there is very little in the way of actual psychiatric treatment. In fact, a student nurse at one point referred to clozapine, the last-resort antipsychotic the majority of the patients on my unit take, as palliative care. I know for some people it’s a miracle drug, but for many on my unit, all it did was keep them just about stable enough that they could handle an unlocked door.

Like I said, my meeting with the community psychiatrist and nurse practitioner went well. We discussed my syptoms and needs. They would be contacting the home support team, which is with the mental health agency, on my behalf. If no day activities had been arranged by May 12, when I’d have my next appointment, they would also work their arses off to get me day activities.

Last Thursday, May 4, I had appointments at two day activity places. One is for traumatic or acquired brain injury survivors, while the other is for people with an intellectual disability. I had my doubts regarding the first one, which I’d visited in August of last year. This was only confirmed when I went back for an intake interview. It was all very formal. Though this could’ve been because I had already visited the place, it made me feel a little unwelcome. When I disclosed I was also going to look at the other place, the staff at the first place said this might be more suitable indeed. I’d still be welcome at the brain injury place. However, I felt there was too little I could do independently enough there.

I had a taxi drive me to the other day activity place. When I opened the door, some clients welcomed me. They found a staff member, who seated me in a spare room and poured me a cup of coffee while I was waiting for the head staffer to come see me. I talked to him and to one of the staff at the group I’d be placed in. The “orange group” is a group of relatively capable intellectually disabled people who do simple manual labor tasks like packaging, sorting etc. Fortunately, there is no pressure to be quick or do it perfectly. I was a little worried the tasks would be incredibly boring and too difficult at the same time, but I realized it’d either be this or no day activities. Besides, the staff and other clients were very enthusaistic and welcoming. It looked like I might actually have day activities right after my discharge.

Yesterday, however, I had a meeting with the social consultant in charge of my case. The day activity place had already made all arrangements so that I could start “working” there and in fact, yesterday morning I was awoken by the taxi driver ready to drive me there. I had clrearly told the day activity staff that I’d first meet with the social consultant and start “working” on Tuesday, not Monday. For a bit, as I met with the social consultant, it seemed as though it’d all been one big mistake and I wouldn’t be able to start day activities today. However, late in the evening, I received an E-mail from her saying she had pre-approved me for day activities and I could in fact start “working” today.

Upbeat #WotW

Another more than a week has gone by. This week was pretty intense. I have been in a relatively good mood most of the time. Also, I made some good progress within the last few days. For this week, I am participating in Word of the Week again and my word is “upbeat”.

Monday started out not too great. I had a conflict with one of my activity staff. In the morning, I had been busy with quite a difficult soap making project and had asked for help a little too many times. My activity staff had, or so she said, been attending to me constantly. She didn’t say so till the end of the morning and said that I couldn’t make soap in the afternoon, because she’d be the only staff in attendance. I was pissed and had an anger outburst. After I calmed down a bit the nurses asked what was up. I told them and a nurse accompanied me to the activity room after lunch to talk to the activity staff. Both of us had been overreacting a bit it turned out and she had been offering help sometmes when it wasn’t needed. In the afternoon, I made an easier-to-make soap and did it mostly independently. On Tuesday and Wednesday I also made soap and had a lot of fun doing so.

On Thursday, I would be leaving for home in the afternoon. I had gotten a letter from the local social consultation team and had handed it to my social worker. I had some trouble scheduling an appointment with her, but eventually, we worked something out. Turned out the letter wasn’t anything we needed to do anything about.

Early in the afternoon, I got a call from my independent consumer advocate telling me that he had made an appointment for me to go take a look at a day activity place next Tuesday. The place had been mentioned during the kitchen table talk with the social consultant and independent consumer advocate, but I had apparently erroneously thought that my town didn’t have a contract with this organization. I will visit the place on Tuesday at 11AM. Depending on how I like that place, we may take a look at another place that’s part of the same organization later on.

The consumer advocate also told me that the social consultant would be calling me about an appointment with the mental health agency for home support services. She called me while I was in the cab on my way home. I will have a meeting with the mental health agency’s home support person on Wednesday at 9AM. My consumer advocate will also be attending that meeting with me. If this and the day activity thing go well, the social consultant is hoping to proceed with getting things arranged that same week, because she will be on maternity leave after that. For those who don’t know, a social consultant is a local civil service person who makes decisions about funding for community care. Because I am now institutionalized and will be going home, a new decision regardng funding will need to be made. Of course, I don’t expect things to move that fast and the social consultant can of course hand over my case to a colleague. Ttill I’m hoping they’ll reach a decision about funding for home care and day activities within a few weeks. That will make it much easier for me to prepare for actual discharge out of the institution.

I went home Thursday evening. On Friday, my husband had to be at work by 6AM, so the alarm clock went off at 4:20. I slept some more but, once my husband was off to work, I could hardly sleep any longer. I had somewhat of a difficult morning, but practising mindfulness helped me get through it. I was upbeat in the afternoon, when a Facebook friend who also makes soap came by. I had met her specifically through soap making, but we also had some fun chatting. We made a lip balm, sugar scrub and goat’s milk melt and pour soap with honey.

Today, I’m tired but still upbeat. The nurses made us fresh macaroni. That’s one of my ward’s summer traditions. I must honestly say my husban’ds macaroni is better, but then again this macaroni is much, much better than the lame excuse for food we get everyday.

Like I said, except for Monday, I’ve been feelign mostly upbeat this week. I am still loving my soaping craft and an looking forward to the progress we’ll make next week.

The Reading Residence

O – #AtoZChallenge on Mental Health

Welcome to the letter O post in the #AtoZChallenge on mental health. Here goes.

Observation

Observation is an essential part of a patient’s care in a mental hospital. In other countries, I’ve heard staff are supposed to check on patients every fifteen minutes or so. Not here. In the Netherlands, if a patient is in their room all day – and yes, most mental hospitals allow this -, no-one cares whether they’re in bed or engaged in some type of activity. Even if patients are in the day room, nurses are more often than not in the office doing their business. As such, I have experienced that nurses “observe” that I had a good day while I was in bed feeling too low to get out all day. Then of course when patients are acting out, nurses have to intervene and “observe” the patients’ misbehavior. This is a pretty sad reality.

One-on-One

One-on-one care is where a staff member is assigned to just one patient who needs a lot of care. This is sometimes also called hand-in-hand care. Few mental health units in the Netherlands offer true one-on-one care even to the sickest of patients. Usually, when a patient needs one-on-one support, they are in a seclusion room most of the time and are allowed out to get their one-on-one attention. I’ve heard about real one-on-one care in other countries. Wonder how they fund it.

Outpatient Treatment

Outpatient treatment is often defined as treatment for which the patient has to come to the mental hospital at fixed times during the week or month. However, home treatment, where the mental health provider comes to the patient’s home, is becoming more and more used especially for severely mentally ill people.

Often, care for mentally ill people starts with outpatient treatment. The last step in treatment, after the patient is discharged from the hospital, is also outpatient treatment. This is called stepped care: a person is only stepped up from outpatient to partial hospitalization or inpatent treatment if they need it and is stepped down to outpatient care as soon as possible.

Asking for Help

Asking for help. It’s one of those things many people have difficulty with. I am no exception. There are many reasons for this. Like, I’m somewhat anxious in social situations. In fact, on an online but seemingly pretty formal questionnaire (the Liebowitz Social Anxiety Scale), I score as having very severe social anxiety. It surprised me a little, given that I have only mild difficulty stirring up a conversation with basically anyone. Then again, most of the situations asked about were situations in which you had to do more than stir up smalltalk, such as asking for help.

I have always had trouble asking for help. Unfortunately, due to my disabilities, I often need help and I can’t avoid communicating somehow that I need it in the end. Ironicaly, this often led to me coming across as very demanding, because I would eventually get frustrated trying to do things on my own and “ask” for help in an aggressive way.

I am somewhat better now at asking for help before the situation escalates, but this is also because I have some momnets when I can ask for staff help in my daily routine. I don’t mean that I can’t ask for help at other moments, but it’s harder to do in unexpected situations.

Anxiety is one factor in preventing me from asking for help. I fear I’ll be a burden, but end up being a burden in the end because I can’t handle many situations on my own.

Another factor, however, is that I often get so overwhelmed with situations that I can’t pin down what I need help with. For example, when I have a computer problem, I often feel like the whole stupid device is crashing when in fact it might just be a particular eBook won’t load (this was a recent actual situation). In this situation, I ended up melting down because I thought my computer was crashing and I didn’t know what else to do than work on the computer and well now I probably needed to buy a new computer anyway, and… you get the idea. The question about what you’d do if your computer crashed, is the only one I end up answering “incorrectly” (ie. like a neurotypical) on the NT screening test on Autistics.org. Then again, I doubt having a massive meltdown is particularly characteristic of neurotypicality. I answer that I ask a family member, but usually, I don’t.

The worst about asking for help is that you have to be really clear about what you need help with and how the other person can help you. This is hard enough when I’m mentally well, but when I am in a bad mental state, this is not possible for me. Fortunately, some good mental health professionals recognize this. When I am in a psychiatric crisis, I usually can’t say what I need, because I have no clue. In this situation, even though I ultimately have the right to refuse intervention because I’m an informal patient, I need peoople to propose what might be best for me. Unfortunately, some people just look at my diagnosis, borderline personality disorder (and forget the autism), and say I am an adult so need to take responsibility for my own life (even though adults with other diagnoses get much more directive care). I may not like being told what is best for me, but sometimes, making this choice is exactly what I need help with.

Mama’s Losin’ It

(Mostly) Screenless #WotW

On Tuesday evening, I wrote here on the blog that my husband can usually fix my computer. That same evening, someone from Freedom Scientific, the screen reader company, called to get into my computer through some kind of distance control, in the hopes of fixing a problem I’d been having for a few weeks, which my husband had been unable to fix and for which he’d blamed my screen reader. After the Freedom Scientific person fiddled with my computer for a bit, it was worse than it was before. She recommended system recovery, which my husband tried on Wednesday, but failed. He took my computer to his place to reinstall Windows.

Since I hadn’t been able to use my computer from Tuesday evening until last night, and I didn’t compensate for the lack of a computer with a smartphone (which I don’t own) or TV, this was largely a screenless week. It was less of a boredom-filled week than my week without Internet acccess last May. I am thankful for loom bands in this respect.

Thursday was actually the most boring day, because we had a rather weird activity staff. I need some help with the loom bands, although after almost a week of nearly fulltime practice, I can almost entirely make a fishtail without help – the only thing I haven’t figured out is how to attach the clip on one of the ends of the bracelet.

Anyway, the other clients and I spent Thursday morning in the room pretty much keeping busy by ourselves because the man had no clue what activities we were doing let alone how to help. Besides, he went on a 45-minute cig break – thankfully there were no clients who needed to be accompanied by staff at all times. After this hilarious if not frustrating morning at day activities, I decided not to return for the afternoon. Instead, I did go to the gym, which was one of my goals for the week anyway.

A nice nurse worked the evening shift and there was some extra staffing, so she offered to help me with the loom bands. We decided to make a loom band heart for my husband. Unfortunately, I fidgeted with it too much so that a band snapped shortly after the thing was finished. I hope this isn’t somehow symbolic.

Yesterday, my husband brought me both my new computer, the one on which Windows needed to be reinstalled, and the older one, for which he had to replace the keyboard. Unforutnately, the old one returned a weird error upon startup and I forgot the password to the new one, so I had to wait for my husband to finish his late shift at work at 11:30 PM to give me the password. Today, he also “fixed” the older one – it wasn’t broken. Yay for my husband and yay for two working computers!

The Reading Residence

“You’re an Adult.”

Last Tuesday, I went to the dentist. I have trouble taking care of myself, including brushing my teeth. I can’t remember to do it regularly, and when I do remember, I find it hard to motivate myself because I’m sensitive to the feel of the toothbrush and the taste of the toothpaste. The dentist gave me a mouthwash with a relatively neutral taste and told me to rinse with that after toothbrushing. I am allowed to brush my teeth without toothpaste for now to get used to the feel of the brush and into the habit of brushing first. The dentist instructed the nurse who was with me, a nurse from another ward, to tell the staff they needed to actively remind me to brush my teeth. The nurses on my ward, however, didn’t feel like this, saying I’m an adult so should take responsibility for my own self-care.

The phrase “you’re an adult” is uttered time and time again when I (or other patients, but I’m speaking for myself now) require help or display a problem that is not normal for a healthy adult. Saying we’re not healthy is not an excuse, because what are we in treatmetn for then? A nurse told me yesterday that if I had a low IQ or had been floridly psychotic, this would’ve been an excuse not to be able to remember my self-care. As if people with an intellectual disability or psychotic disorder are not adults.

The thing is, whether you’re physically or mentally capable of taking care of yourself, does not determine whether you’re an adult, and whether you’re an adult, does not determine your respectability. The idea that an adult should be capable of caring for themself, is ableist. The idea that an adult (at least, one who displays adult abilities) is more respectable than a child, is not just ableist but ageist too.

Honestly, I don’t care whether I’m an adult. I don’t care whether my abilities reflect my age. I care that I’m an individual and have individual needs. In some areas, I’m self-reliant. In other areas, I require practical care. In others, I require guidance. None of this makes me deserve less human dignity. Similarly, children and persons of any age with intellectual disabilities deserve as much human dignity and respect as a healthy adult does. We treat them differently, of course, but that is because they have different abilities, difficulties and needs. A child is different from an adult, and an adult with a disability is different from a non-disabled adult, but that doesn’t make them a child. Everyone is an individual who deserves to be treated like an individual with dignity and human rights.

Medicating Away for Autism: Dilemmas and Disillusions

A few weeks ago, I saw an old post on autism and medicating and what’s the dilemma being tweeted again. It got me thinking about my own journey on the path of the medication controversy.

I first learned about autism and medication from the likes of APANA (Autistic People Against Neuroleptic Abuse) and Autistics.org. It was communicated clearly on these sites that autistics should only take medications if the right supports are in place, they’re themselves suffering (as opposed to the parents suffering from the autistic’s behavior) and if the medication is not an antipsychotic. I took this information at face value. When I was myself diagnosed with autism, I became an enthusiastic autistic advocate. I was soon disillusioned.

When the option of medication was first mentioned to me, I was miserable. I had the right supports, although I was soon going to lose them due to moving into independent living. An antipsychotic wasn’t the first medication mentioned. But it was what I ultimatley ended up on. I wrote a blog post the next day about really well-informed consent. I wasn’t really aware of the fact that I had truly been mildly coerced into consenting and that 95% of the “really well-informed” bit came from my own Internet searching rather than the psychiatrist.

I quit my antipsychotic eventually when I realized it was being used as a substitute for proper care. I used the side effects as an excuse, but really I was still miserable, only just not miserable enough for increasing my supports. I was really fortunate that the psychiatrist who ended up admitting me to the hospital three weeks later, didn’t consider prescribing me the same antipsychotic, or any antipsychotic, again.

For years, I was without daily medication. I noticed how the use of PRN oxazepam was coerced, and I wasn’t going to go along with it – unless I was truly miserable. Or unless seclusion was touted as the only alternative.

In late 2009 and early 2010, I had the worst irritability I’d had in years. I knew that I might benefit from more support, but I also knew this wasn’t feasible, and my support was okay at least. So when my psychologist proposed I talk to the psychiatrist about medication, I consented. The psychiatrist gave me plenty of inforation, including many of his reasons for and against particular drugs (mood stabilizer vs. antipsychotic and if an antipsychotic, which one). He also gave me a week to think, and I consider the consent I gave this time for taking the antopsychotic Abilify to be really well-infomred.

My dose, however, had to be increased several times. I remember once telling the substitute psychiatrist, a much less considerate doctor than my regular psychiatrist, that I felt I needed more support, but I was bluntly told off and prescribed a higher dose of Abilify. Of course, legally I could’ve refused, but the irony of informal hospitalization is that you’re mde to believe you have a choice, only you don’t. I had, after all, been threatened with forced discharge if I didn’t consent to seclusion a few years prior, and this time, I didn’t even have a home to go back to, so what choice did I have?

For three years, I did fine on a moderate dose of Abilify. I did get a low dose of the antidepressant Celexa added, which forutnately never had to be increased. Then, in the summer of 2013, I moved to my current institution and soon found I had more meltdowns. I was threatened with the locked ward, in the kind of way where nurses don’t really mean it but just want to scare the crap out of you, so what choice did I have but get my Abilify increased again. And again?

I’m now at almost the highest dose of Abilify that can be prescribed, a five-fold increase from my original dose. I’m feeling really drugged up lately and in a kind of agitated state where I’m too drowsy to get out of bed yet feel irritable nonetheless. I’ve raised this issue with the staff and my psychologist several times, but nothing has come out of it.

Currently, I’m taking an antipsychotic to manage behavior that other people suffer more from than myself while I don’t have proper support. After all, proper support isn’t needed when you aren’t a pain in the neck of the staff, and when you are a pain in the neck, it’s all “attention-seeking” and “overreactivity” and they’ll treat you like crap until you’re begging for a PRN pill. Is this what Autism Daddy means? I’m assuming he wants the right support for his son, but he doesn’t care that other people are drugged up for a dentist’s appointment. Now I know that his son is more severely aggressive than I was when I gave my really well-informed consent to the original dose of Abilify, but I’m still worried.,/P>

As I wrote in my previous post, my psychologist considers medication to be a substitute for proper support. I disagree, but I’m afraid that I just got to go along with it, and the fact that I’m an informally admitted patient only makes this a little harder.

Handling Tantrums and Meltdowns in Children with Autistic Spectrum Disorders

Many children with autsitic spectrumd isorders, including pathological demand avoidance syndrome, have meltdowns. They can have different causes. A child may act out because they’re impulsive and find it hard to delay gratification. This is different from being spoiled, although the difference may be subtle. I still act out when I ask for help and am not told when I can get it. If someone is clear when they can offer me what I need (I don’t act out for not getting something I merely want, for clarity’s sake), I usually don’t have a meltdown.

On the other hand, as a child, even up to early adolescence, I used to have tantrums when my sister got candy or a gift and I didn’t. This is not normal for a neurotypical adolescent, but that doesn’t make it not a tantrum. An autistic child beyond the typical age for temper tantrums may not be able to take the other person’s perspective, so they may feel they’re being mistreated. This can be explained in a social story, but if a child still tantrums when they’re simply not getting their way, treating it as a regular temper tantrum is best.

Some children or adults act out because they’re frustrated and don’t knwo how to solve a problem. This is something inbetween a temper tantrum and a meltdown. I often used to be frustrated if my computer was having problems, but I would not use strategieis that would solve the problem, either socially acceptable (asking for help) or not (screaming for help). In one case when I was sixteen, I totaled my computer trying to make it work again, losing five months worth of important documents.

According to Adelle Jameson Tilton and Charlotte E. Thompson, authors of The Everything Parent’s Guide to Children with Autism, 2nd edition, a child can also have a meltdown because they’re denied something they want, but they lose total behavioral control and don’t “switch off” suddenly again if the wish is granted. Children in a meltdown do not take precautions to prevent themselves from being injured. They will not care if someone is watching or reacting, and the meltdown winds off gradually. I had meltdowns often when I was at the independence training home, throwing objects in my own apartment while no-one was there. I did need help cleaning up the mess, but usually I had calmed down and wasn’t asking for what I had originally wanted once the staff helped me clean up.

From my experience, I can tell that a meltdown can also occur when I am overloaded either cognitively, emotinally or sensorially. I remember a few weeks ago completely melting down even though I had gotten the attention I’d wanted already, because I couldn’t cope with overwhelming emotions and had failed at channeling my overload. When later asked why I had had this meltdown, I had no clue. This is in my experience a distinctive characteristic of a meltdown: meltdowns do not necessarily have an underlying reason.

Meltdowns can also happen after a small seizure, according to Jameson Tilton and Thompson. I read in my neuropsychology textbook that aggression during a seizure is very rare and usually stereotyped, but aggression after a seizure may be more common. If a child seems to be totally uninvolved in their environment for a few minutes before mtling down, this could be a sign of a silent seizure.

In children with pathological demand avoidance particularly, a meltdown may come on as a result of anxiety. Phil Christie and others in their book Understandign Pathological Demand Avoidance Syndrome in Children, make a rigid distinction between aggression with the purpose of avoiding demands and meltdowns out of anxiety, but in my experience this distinction isn’t always clear. After all, demand avoidance often stems from anxiety and/or overload. In situations where an autistic or PDA child is overloaded or panicking, it is important that adults reduce the demands placed on the child, use simple language and do not enforce social niceties such as eye contact.

It may help to evaluate your own behavior as the adult managing a child’s meltdown. You can ask yourself whether the demands you placed on the autistic or PDA child were reasonable, whether they were truly non-negotiable (so that you were willing to endure a meltdown for them), whether you reacted properly or may’ve overreacted, etc. Remember, a meltdown, unlike a temper tantrum, is not a power play, and as a parent, carer or teacher you shouldn’t make it about power.

If the person who had the meltdown is an older child or adult, and you have a trusting relationship with them, involve them too in the evaluation process. (Note: if you do not have a trusting relationship with them, this is something you’ll need to work on!) Evaluating should be done in a non-judgmental way, avoiding the blame game. For some children, social stories may be appropriate, while others can tell you what you need to do differently to help them prevent or minimize a meltdown. This is again not to say that you’re to blame for the meltdown, but many children and adults in a meltdown do need external support.

Why I Can’t Live Independently

I was asked the question again, on a Facebook group for parents of bliknd/autistic children (where I share my perspective as a blind/autistic adult). When people realize I’m above-average intelligent and verbal, they often ask why I can’t live independently. That is, unless they, like my therapist, assume that no blind person can. She originally had it written into my treatment plan that, if I had not been blind, I would’ve been able to live independently with outpatient support. I had this removed because it quite likely would’ve impacted my funding.

Honestly, it is quite a painful question for me. I have somewhat suppressed the memories of the time when I did live on my own, and don’t really like to think of that time. Then again, I have to if I want to clarify my support needs.

I couldn’t live on my own back in 2007, when I tried, because I had terrible meltdowns in which I’d become self-injurious and aggressive, and I wandered. I also couldn’t do daily living tasks because I needed very clear instructions and needed lots of one-on-one instruction. I lived in an independence training home prior to this and got lots of instruction there, but I got overwhelmed very easily and had meltdowns etc. then. I was more or less kicked out of the independence training home because of my meltdowns.

In addition, I have mild motor deficits. I don’t know whether this is the cause of my inability to perform simple daily living tasks like putting a topping on my bread, but I can’t do these things. My gross motor skills are better, so I can technically operate a vacuum cleaner for example, but I get overwhelmed by the noise so much that I either forget where I was vacuuming or shut down completely. Vacuuming and sweeping are not the problem, as blind people in the Netherlands generally get fudning for a housekeeper to do these tasks. Unless, that is, you have a partner who is non-disalbed, but then again my husband has to do all the cleaning now that he lives alone, too. Same for cooking, so these are not a problem.

It is really hard to put into words what went wrong when I lived on my own. Yeah, I had meltdowns and wandered, but, as an intelligent person, can’t I just control those behaviors? With medication (including a high dose of an antipsychotic), these behaviors have become less frequent, but other than that, I’ve found nothing that helped me. The meltdowns and wandering still occur regularly enough that it’d be a safety issue if I lived independently again. Besides, the fact that I have 24/7 support available should I need it now likely causes the meltdowns to be less frequent. I have learned to delay my need for assistance, but still ultimately need a good deal of assistance during the day. Besides, in cases of (perceived) emergency, I just need to be able to reach someone. And you might say my perception of emergencies is screwed, but when I’m sensorially and/or cognitively overloaded, I can’t make that judgment. Oh, did I mention I can’t get myself out of my husband’s apartment safely using the stairs, which I’ll need to in emergency cases? I could likely learn this, but I’d need a fair amount of instruction. I do know the stairs and don’t know whether I could walk them without falling if I didn’t get assistance. For those who’ve seen me walk the stairs at home fine, these are firstly different (indoor) stairs, and secondly my motor deficits have gotten slightly worse.

When I write this, I can hear the judgment of certain people, including possibly certain readers, in my mind. Some people may want to minimize my support needs because they are in denial. Others mighht want to discredit my opinions, for I am allegedly not like their child. I was going to write about all the unsafe situations I’ve been in (and not just unsafe as perceived by me) because of lack of support, but I think it’s pointless. It hurts too bad to think of these, and most likely people aren’t going to change their perception of me unless they genuinely want to, in which case the above paragraphs should suffice.