ASD parent coping with a child’s tantrum?

How do you cope with a child having a normal tantrum?

For me, in the home I combine ignoring the behaviour with the occasional time out, depending on the situation. At home this works well for me. When I am out in public, where the best (read as worst) of the tantrums occur these techniques do not work. I have no idea what to do as I want to go into meltdown myself.

It feels as if my brain is  going to explode. I feel as if my brain is expanding in my skull and the pain and pressure to release it is immense. Years of hiding emotion has taught me how to divert these explosions but I will admit it is getting harder. I want to start punching and kicking. I want to start screaming and crying. I know as an adult I cannot do this in public or I will likely be arrested. I just do not understand why now this pressure to meltdown is becoming so great when I have been able to avoid it for so long. I worry that I will not be able to avoid it forever. I cannot bite my tongue or my cheek forever.

People in public never have sympathy for a parent struggling with a child having a tantrum. No one offers to help or even offers words of support. The response flits between outright disgust, “if that was my child I would give them a  good spanking” or “my child never behaved like that” to laughing at your predicament. I assume even an NT parent would struggle with their offspring rolling around a busy public street, but as an ASD parent of a child having the tantrum, I am lost and confused. As my brain starts to shut down and go into self-protective mode, I become numb, my ability to respond to the stimuli around me reduces. My focus becomes the child and its behaviour. My mind clears itself of ideas on how to cope with this child and its behaviour. I cannot understand why the child is doing this. I cannot understand why the child cannot or will not reason.

I don’t even understand why a child would roll around a busy street or crawl up a busy shopping street when they can walk. I never see other children do this. Is this even normal behaviour?

I know when in rational, relaxed mode that tantrums are normal child behaviour and that they are trying to convey something to me. At least that is what the professionals say and I have to believe them. What I have trouble with is remembering this mid tantrum. I know it is a problem for people with autism to understand the thoughts and reactions of others, I  think they call it theory of mind. I admit I have problems with this. There is what I am ‘supposed’ to feel and think and understand and then what I actually do feel and think and understand. They are diametrically opposite at times. I admit I cannot understand why a child cannot do as they are told, especially when it is the most logical response to something. I admit I do not know what to do in this public tantrum situation. I find it hard to cope with another human being having independent ideas that do not match with mine in situations like this. If I want to walk to the train station to get us home, it seems logical that that is what we shall do or we will never get home. I cannot understand why a child who is having a tantrum to go home, would not see that making it to the train station would mean we were on our way home.

I admit, it annoys me that other people of any age cannot see the logic of my reasoning.

I admit I rarely take children out on my own for this very reason. This kind of tantrum behaviour is not a one off. When I am the sole adult carer, it is a regular occurrence and I have no idea what I am doing wrong or how to stop it. I do not think the child is playing on my vulnerability as such but it does become a clash of wills. I was brought up believing the adult was always right and this was why I had to do as I was told and so I always did. I do not understand why children have to be so challenging or test the boundaries.

Having a moan

A lot of people use their blog to moan and so that is what I am going to do today.I have a few things that are annoying me and I have to say it somewhere. It is just my opinion and I do not want confrontation or aggression because of it. This is probably too much to ask of the internet.

My first moan is about people who self diagnose. Please do not get me wrong. I understand without self diagnosis many adults would remain undiagnosed but, and this is a big but, why are some people convincing with their diagnosis and other appear as if they are just collecting multiple condition labels? There is one person who has recently angered me. I know this person well. I can say with a huge degree of confidence they do not have autism. Not in the slightest, not even really well masked, not even PDD-NOS, not dyspraxia and not ADHD. There is nothing in their life that would suggest a diagnosis of autism. This person does have a unipolar depressive disorder and is very very needy. It is this needyness that has sent them looking for groups of people to try to fit in with. I understand this, I really do but it was ME/CFS a few months ago, then fibromyalgia. Next they were convinced, despite tests saying otherwise, that they had MS. All magically cured overnight as the next diagnosis was discussed. Now they have decided to have autism.I know this person needs support to discover herself and talk therapy to cope with her lack of confidence and self esteem but an autism diagnosis will not cure all her problems. The isolation does not go away and the mental health support she current receives will be taken away and not replaced.

Autism is not just a condition you pick up when someone sneezes on you in a meeting. You cannot just decide to have it one day.  You do not walk into a supermarket of conditions and pick it off a shelf. Everyone has signs of being on the spectrum because as humans we are all on the same spectrum. That is why we call it a spectrum. If we think of the electromagnetic spectrum, you would not say that what is visible e.g. yellow in a rainbow, is the same as a gamma ray or radiowave. Visible Yellow cannot be a gamma ray, it is on the same electromagnetic spectrum but it is different. All humans are on a spectrum. I am yellow, this person is a gamma ray.  Neither of us can pretend to be the other. And while it is fantastic that this person has decided to take on autistic rights in forums etc, this will be dropped as soon as she gets bored with the diagnosis and tries to find a new one. It is the same pattern every time.

My next moan is about the change of diagnosis in DSM V – When I was going through the diagnostic process, it was explained to me that the diagnosis of Aspergers was going to be swallowed up by a generic ASD diagnosis as there was not enough to distinguish between the two as different conditions. Remember the spectrum? One would be placed on it according to ability and disability, high functioning or low functioning for example. There is an awful lot of scaremongering with regard to Aspergers being removed and knowing how the American medical profession works, it will be because it is not a money spinner for the,. That said, I can see positives to doing this. If they remove aspergers from DSM, then the prejudice I have experienced as a person who has a diagnosis of autism and not aspergers may disappear. If someone was so poorly functioning in life that they got a diagnosis then it is unlikely that they will have it removed, merely placed on the autistic spectrum where aspergers once sat but without that title.

I will be honest and say that I do worry that a lot of people are said to be on the spectrum because they are a little different or odd but not incapacitated. To me personally, the disabling effects of having autism should be the deciding factor, not just the label applied. I read so many people on forums who say ‘I have aspergers but I do not have any problems in life with it, never had a meltdown, I have a great social life and friends, a great job, no obsessions or repetitive behaviours, no processing or sensory or functioning problems’, and it does make me wonder, what the hell they were given a diagnosis for? I’m considered high functioning and I can barely make it through a day on my own without some autism related problem creeping in. And it does make me wonder if perhaps there has been an over diagnosis of the condition. I feel the changes to the DSM could restrict diagnosis to those who are disabled by their wiring. Of course I could be completely wrong but I discussed this with my autism worker, who confirms that this is their way of thinking about it too. She believes that people with an aspergers diagnosis will not automatically become NT but that they will be placed on the high functioning end of the spectrum. It is not as if in adulthood people with HFA get much in the way of support anyway.

I was diagnosed with ICD-10 as F84.0

I have probably annoyed enough people on the internet now but I just wanted to get that out of my system.

Who to please? Me or You?

I get so annoyed at my family sometimes. I know me receiving a diagnosis of autism doesnt change anything for them but it does for me. I no longer have to pretend that I am NT to suit everyone else, and sometimes I wish they would understand this. I get so tired of being told I am great at socialising, when to do so is a great expense to myself. They continually forget that small part of the problem. I can do it but it kills me to do so on so many different levels.

If I socialise like any NT person does, I am exhausted after for days. Not just a bit tired, I mean full on fatigue, difficulty with basic cognitive tasks, withdrawal, physical pain from the fatigue and more. Its so easy for them to forget this is what it does to me because they never have to deal with it, and I am so tired with constantly having to remind them. I had hoped once I received the diagnosis they would make some kind of effort to understand or at least the diagnosis would give some weight to what I have been saying for my whole life. It seems I was wrong.

Having autism is only relevant to their lives, when it suits them. Like when I asked my mother to tell nobody about it as it was my job to tell, she agreed as it was what I wanted, and has since proceeded to tell my siblings, her siblings, her cousins and anyone else who will listen. What I want is irrelevant. My secret is the worst kept secret in the world, and I have only told three people and one of them has told everyone else. I never really understood the attraction of gossip, worse still when its a mother spreading gossip about her daughter. Why would anyone do that?

I really hoped this diagnosis would allow me to live the life I wanted to live but it seems nothing has changed except the label. I am still expected to be the same as everyone else, despite the obvious difference and the problems it causes me. I am still expected to behave like an NT even with the negative effects of doing so.  Everyone has expectations that I have difficulty in meeting, and to do so is at the expense of my comfort, my mental and physical health.  They know this as I have told them this for years. Why do they not care?

They choose not to listen. I am not sure how I am expected to change that. Or am I expected to be as ignorant as they are and just to do as I please regardless?

I really do not understand.

The Buspass.

The good news is that I had my DLA renewed at the same rate as before without further questioning and very quickly. It was a huge relief to me. I still panic about not appearing disabled enough for the public or DWP though.

With the return of my DLA acceptance, I knew I had to reapply for my disabled persons buspass. The buspass is a lifesaver for me. It allows me to take a carer with me wherever I go and being able to do so is the only way I can get out and about to places other than the local shop or park. I am just waiting for the pass to be delivered. If I had not been awarded DLA care, I would not have been eligible for the buspass. As well as the financial problems an unsuccessful application would have caused, it would have meant I was unable to leave the house.

What I do not like about the buspass is that it is the same as the ones the elderly use. It is not the same as the season tickets used by other travellers, who just wave it in the direction of the driver. I have to put my pass on a machine that registers it before I get my ticket. Everyone on the bus knows that those who undertake this process are either elderly or disabled. As I am not visibly elderly or disabled I have been subjected to dirty looks, underbreath comments and direct comments as I get on the bus. People speculate as to what could be wrong with me.

Getting on a bus is hard enough for me, even with a companion. When I am subjected to such negativity and fear it makes me worse. This never used to happen. I have only noticed it happening in the past year, prior to that I had never been subjected to such hostile behaviour by other travellers.

I have been called a liar, a spaz, a mong, a retard, a cheat and a scrounger all because I use a disabled person’s bus pass. I have had girls giggling and talking about me within earshot trying to work out what is “wrong” with me. I have had grown adults do the same. It is as if I have, by using a buspass, become public property.

I already feel out of place in the world and I have enough troubles leaving the house as it is.  I struggle at times with the diagnosis I have, even knowing it is the right one. Knowing that the world is actually passing comment and feel as if they have the right to do so makes me even more uncomfortable going out.

People need to understand that disability comes in all shapes and sizes and it is not always visibly physical. My disability is physical in that my brain is different from the majority of the population but it does not show.  Because it cannot be seen like a missing limb, I am treated like a liar, I am talked about, pointed at and commented on as if I belong to the public domain like some kind of celebrity.

When you have an unseen disability, people assume either that you will be lying or that you can recover. As I’ve discussed before I will never recover. I was born this way and I shall die this way. Interestingly, my DLA award will be reviewed in 5 years in case there are any changes in my condition.

A friend of mine said of herslef, “I was born autistic, I will die autistic. I will never get any better and I will never get any worse” and this makes a lot of sense to me. I know that having autism is just a way of being. A difficult way of being that places stresses on me that non-autistic people will never experience. Why then do those who award DLA ask to continually assess a condition that will never change? A person who has no legs will not grow them back in 5 years time. It seems like a lot of hassle for nothing.

Do not get me wrong, I appreciate that cases need revisited as awards cannot be given indefinitely with no reconsideration but I do not understand why the process is so long winded and stressful. If only people understood the stress involved. If only people understood that the things that are most disabling to me will never improve or change.

I suppose I should be grateful for the quick award. I hear of many who have not been so lucky.

Discharge and DLA

I have been discharged from the autism service. You only get a couple of meetings post diagnosis then you are on your own.  I’m not entirely sure what to do now. I still have all these difficulties in life that will never go away and I have no support other than my family. I had hoped diagnosis would magically provide all the answers I needed to live a “normal” life and if I am honest it has left me with more unanswered questions than before and a far less positive outlook on life.

I want to know how I am expected to cope with my difficulties without imposing on others. The reason I was in the grasp of the psychiatric services for so long in the first place was because I was unable to cope with these difficulties and real life, and I honestly hoped getting the right diagnosis would provide me with the necessary coping mechanisms to survive.

There is nowhere for me to turn. Every service I have approached offers social supports and befriending but I do not want to socialise and do not need help in that department. I do not need a place to go and undertake my special interest, I have a home to do that in. I need hints and tips on surviving modern life with hypersensitivities, inability to multi-task, inability to cook, cope with cleaning, washing and especially going out on my own.

How do I learn to keep my stress levels at a minimum when there is nothing available for people like me? Ordinary stress management classes are so irrelevant to my needs, I can already breath. I cannot convey to ordinary folk, how I react to stress is not the same as them. Stress can cause me to meltdown and if the stressor is not instantly removed this turns into serious mental health problems. In everyday life the stressor cannot be removed that easily or instantly. I am unable to cope with simple things like paying bills or complex things like emergencies and cope with my family.

I cannot do two things in one day. I can be a mother or I can go to the shop for food. I cannot do both in the one day. It’s part of the reason I had to leave my studies. I wish I could do two things in one day. I wish I knew how to be able to do both.

I have recently reapplied for my Disability Living Allowance after a 5 year award. Soon I will face an Employment and Support Allowance assessment, which will cause me to meltdown. Even thinking about it now I start to panic. These two incomes allow me the ability to contribute to existing for myself and my family, what if I fail the assessment and lose my income? How can I convince anyone that I am not just a scrounger as the media have continually pointed out? Without these incomes I will probably end up in an entirely unsuitable lifestyle and by lifestyle I do not mean luxuries and social life, I mean if I have to work and parent in the same day, I will end up in a psychiatric hospital unable to cope with the stress. If I do not get a job I will end up in a psychiatric hospital unable to cope with the guilt of not catering for my family and the stress of life in poverty. When I read it back I know how it sounds to a neurotypical. I can imagine their reaction, “everyone needs to work then go home and parent” but not everyone has autism. I do.

I wish I was a different person. I wish I was a capable person. I wish anxiety and stress did not have such a physical response on me. I wish I did not have autismt. When I do too much, including basic socialising such as having visitors or attending a doctors appointment, I become severely fatigued, I suffer insomnia, my joints and muscles ache, what is a brain wiring issue, becomes a very physical and painful issue. I will not be able to work in this condition. I wish I could. I wish I was a superhuman, I feel like a sub-human.

I am terrified how this is all going to affect my family. I want someone to come with a magic wand and make me the person I believe I should be. If I had known this diagnosis would end up disabling me so much, I would never have had a family. It is unfair on them to have to suffer because of me. I wish my problems had only been due to a mental illness, as I have said many times before, then I could at least face the possibility of recovery or at least medication to keep it under control. There is not recovery from autism and no medication to mask the ‘symptoms’.

Noone wants to be able to work more than me but I know my support needs are more than any employer would be willing to consider. It disgusts me that we live in a society where someone can say that and 99% of the population will know exactly what I mean and probably agree. Society and the media and the MPs have made me feel like a worthless drain on society. Someone who would be better off dead for all of humanity.

I REFUSE TO GIVE IN TO THOSE ATTITUDES but i am sick of the battle.

I want to work but I am not like everyone else and I cannot just take the first job that comes along. I need to be placed in an appropriate supportive environment in a role that will not make me ill again. I need to ensure that my days are split evenly so that one day I am a mother the next I am a staff member. Who in reality can help support me in that? Who would put up with such necessary demands?

My DLA helped me to fulfill the necessary roles for my family while being able to do other things. I do not mean leisurely things but if I had to attend an appointment it meant that day someone else could help with my family or home that day. I hate that I rely on others to help but if I am not in a position to be able to financially afford such support then we will be stuck.

My current DLA award runs out in early January. With it goes my free travel, a lifeline to get me out of the house. With it goes entitlement to any number of support services and help. With it goes entitlement to finance that enables me to feed and clothe my family.I have had nothing but an acknowledgement letter from them and with Christmas coming up, I don’t expect to hear from them any time soon.

I asked not to be assessed by a doctor I do not know. I know they will not listen to my request.  I have a condition that often manifests itself in fear and I am through no fault or choice of my own put into a situation that creates fear in even neurotypical people, the threat of not having any income or ability to look after their family. Explaining my inability to a stranger is a nightmare scenario. How can I convince another when I have difficulty believing this is me for life without change? It has been that way for 4 decades you would think I had accepted this by now. I do not understand why it is so hard to accept.

For anyone who believes surviving on disability benefits is like having a money tree, they need to see the hell my life is. I know there are people who believe I would be better off dead and others who feel people like me should never be born because we are a drain on society. At times I wholeheartedly agree. I feel often it would be better for my family if I was dead. I do not think they would agree. The taxpayers might. I wonder if that is why there are not many post diagnostic services available, or is it that ASD needs are to individual and complex for any service? That is for another post.

“you weren’t this autistic before”

There are some days when it’s just so hard to get by. It starts with something silly like public transport changes that on its own isn’t an issue but as the day goes on little things just pile up.

Listening to a class on sexual assault among people with learning disability. The fact is banded about that most sexual assaults happen in your own or someone you know’s home and almost always by someone who is known to you. This makes me feel awful as I didn’t meet that criteria. It was morning, daylight and I didn’t know my attacker. My circumstances were not common enough to discuss.

It’s funny how something that didn’t seem to bother me too much at the time is having a far greater effect on my life now. It never upset me for years and now I find it very hard to think about without getting upset. It’s dominated my mood all day.

Then another class and the teacher hasn’t done what he was supposed to but instead of being calm about it he snaps at me as if I was in the wrong. I have to suffer for his wrongdoing.

This is the final straw. I feel meltdown coming on. I need to get away from humans. I have nowhere to go. Even home isn’t a sanctuary. There are family responsibilities. The kids need attention, their father needs attention. The television is blaring, the pets need attention. Even silence is deafening.

I have homework to do, I have meetings all week and now some friends who never visit want to come and see us. We don’t have visitors often enough to refuse but all I want to do is shut down in a bath or sleep. They don’t know about my diagnosis. Noone other than my closest family and some of the teachers do.

While people understand some parts of autism, the stereotypical bits where I’m meant to unable to talk and rock in a corner, noone stops to consider in their busy and stressful lives how people with autism are really coping. If its stressful for an NT, how am I expected to cope.

I swore today. I swore lots. I let people hear me swear. I rarely swear. I now feel bad.

As a newly diagnosed person I am torn. Torn between what people expect from me and how I am naturally. I have spent my life performing like a monkey to fit in. Knowing now I don’t fit in and shouldn’t have to perform to keep others happy doesn’t help. It adds another layer of stress.

People start to think I’m using my new diagnosis as an excuse. “you weren’t this autistic before.” The truth is I always was but was told I had to be someone else. Now I feel as if I’m making things worse for everyone around me if I don’t keep up the pretence but I’m crumbling under the pressure to do so. It’s a whole new dimension of pressure.

I am struggling between knowing I’m lying about who I really am but keeping the rest of the planet happy and letting the real me shine through which will only irritate and annoy. People don’t like the me who can’t or won’t cope. They have no time for my stressing or need to talk about how I’m feeling all the time. They think I’m being self indulgent when all I’m really doing is trying not to go back to a very bad place. The place I existed in for decades when I tried to fit in without knowing I never would.

I do need to moan a lot. It’s my release but the Nt world have no patience for it. It doesn’t fit with how I should be and in their eyes how I should be is the reality not how I am.

I want to scream and shout and thrash around. I want to get angry with people, for me always considering their thoughts, feelings and reactions to situations and them never considering mine.

I just want one person on this god forsaken planet to understand just a little bit and make concession for that.

I am asking too much and so I have to suffer in silence.

The autistic parent

If you are the parent of an autistic child, you may feel there is very little or limited support or that the support does not fit in with your personal needs.

If you are an autistic parent, you have no support.

Oh, you can attend any number of daytime socialising events, you can go to daytime drop in centres, you can make appointments to see relevant psychologists or mental health professionals… through the day.

But what if you have daytime commitments? What if you don’t really want to attend the local day trip to the railway museum (don’t forget your own picnic)? What if you don’t have childcare for such things?

Well, essentially you’re on your own!

If you’re lucky, you may have family who can help you out. You may have children of school age, so childcare isn’t so much of an issue. You may have the very rare opportunity of evening appointments. You may no have daytime commitments.

If not, welcome to my world.

I have been invited to a series of 8 post diagnostic meetings, each lasting 2 hours. 1 afternoon a week for 8 consecutive weeks. These meetings look fascinating. A cross between counselling and informative seminars. They look like, in terms of understanding the condition and my life with it, they will be extremely useful and helpful to someone like me.

I cannot attend as I have daytime commitments.

The other supports on offer, such as drop in centres are all mid afternoon too.

I may not work at the moment but I intend to and am studying towards getting work, which is why I cannot do daytimes. I’m sure I’m not the only one.

There is so little support available for higher functioning adults on the spectrum. You’d think we didn’t need or want any.

What those parents with autistic children don’t always take into account when they complain of problems with support for their children, is that it only goes downhill from there. The support for children and their parents appears to cease to exist beyond 16 or 18 in any kind of tangible form.

If you didn’t receive support as a child, as I didn’t, then you’re stuck in a strange limbo.

The therapy and CBT isn’t as readily available and you are not a priority over those with mental health needs, you’re right at the back of the queue. When it was thought, mental illness was the problem, far more help was on offer with the likes of CPN’s, OT’s, evening group sessions etc.

In many respects, I wish the problem had been one of mental illness. At least there was a chance for recovery from that.