things seem to be getting worse

I am new to this group, and would love to have any words of advice, wisdom or encouragement from anyone. I have a 9 yr old daughter that is high functioning autistic. We had her diagnosed at 2 and have had our challenges ad successes over the years. Currently, we are dealing with uncontrollable mood swings and violent episodes. Lots of lashing out at others (pulling hair, ripping clothes) and destroying things (throwing pictures from thew wall, braking glasses, etc). In the past if we had any issues of frustrati0on, we would see them coming and work to distract and redirect. We do not see these coming. She's fine one minute and attacking us the next. I feel extremely desperate,as I see many of the doors we have opened being shut due to this behavior. She was kicked out of spring break camp this week, and we are now looking for an autism school, as her mainstream option with an aide is no longer working. The doctors seem to scratch their heads and blame each other's meds. For those parents with autistic teenagers or adults -- is it possible that this is due to hormonal changes associated with puberty? Has anyone experienced the onset of these drastic violent episodes? Were you able to identify the cause? Did you overcome them? Thanks for listening.

I also have aspergers synrome.

I was a violent child right up untill I hit my twenties.

Puberty can cause behvaiour to increase epecially if her body is changing.

Before you can tackle these types of behaviour you need a thorough understanding of what he is doing. You firstly need to observe the behaviour, record all the information and also the situations in which it happens. You can do this by using an ABC diary

Antecedents ? This is a description of what happens before the behaviour incident. Where it happens, who?s there, and so on. In other words this is the setting in which the behaviour occurs.

Behaviour ? This is a clear description of what you see and hear your child do.

Consequences ? This is a description of what happens just after the behaviour incident, including your reaction.

Describing the Antecedents

You need to record the time, day and date.

Anyone else who is present, when the incident occurred.

The location the exact place where it happened

What happened just before the behaviour, what was the child doing?

Describing the Behaviour

Give as accurate account as you can, every behaviour that happened for instance he may have scratched someone, and himself kicked a table etc all at the same time so you need to be as accurate as possible.

Describing the Consequences

How did you react or the people around you. Did anyone intervene?

How long did it take for you or anyone there to react? For example did you send him to his room as soon as the tantrum started or did you wait for a length of time?

How did the child behave after your or anyone else?s reaction was it worse or not?

How did things turn out in the end, did he scream even louder, did you give in, or did you do something else to solve the problem.

Starting the Diary

Use only one behaviour at a time. Decide which behaviour you want to decrease.

Do the diary for about a week.

Try to fill it in as soon after the behaviour as occurred so everything can be noted.

Coping with problem behaviour

After completing the diary you should see a pattern developing. You may also realise what triggers the behaviour. Below are some things you can do to cope with these behaviours.

Organize something to distract the child with something he likes doing.

Avoid the word NO as this may add fuel to the fire.

Encourage the child to relax, to calm down. A quiet comfortable room, relaxing music. You could even try and get them to use their ritualistic behaviour as a means of relaxation or diversion.

It is important to return the child to the original situation as soon as they are calm as to prevent them from learning that disruptive behaviour can be used to avoid something they don?t like.

Physical activity is another way of helping them to blow off steam.

When the child is not able to control their own behaviour, you may have to try and stop it verbally. The child needs to know that you mean, what you say. You could use a simple command like ?Sit down? and quickly follow this with a ?Do? command.

Sometimes you may need to leave well alone and let them ?weather the storm? . If possible remove yourself from the room but make sure that the child is completely safe eg. No objects to damage himself etc. you need to calm yourself before you can go back and deal with the behaviour. As a last resort you may have to restrain the child but only do this if you know how to do it.

The idea is, is to replace the challenging behaviour with a more desirable behaviour. Reward and reinforcement are a very good method.

Always reward desirable behaviour no matter how small, you will know your own child what rewards him.. You could use a star chart or if the child does not understand this you could use other rewards like letting him have a certain toy, giving him a sweet. If he likes praise give him lots, clapping and telling him how clever he is.

This should reinforce the behaviour, eventually as he will become to realise that he will be rewarded for this behaviour and hopefully will want to do it more.

Try and ignore undesirable behaviour if at all possible, and when he shows desirable behaviour hopefully he will come to realize that he gets rewards for certain behaviours.

If you can, try not to react to undesirable behaviour as this has gained a reaction. Autistic people do not understand emotions so they will enjoy just getting a reaction from you especially if you are shouting , this may seem like a reward to the child and they may display the undesirable more just for the reaction. The best way is to stay calm and try not to change your own behaviour. Because of the situation I know how difficult this can be but you need to be in control. Then you are in a better position to deal with it. The child will react to what you are doing because he can?t understand your behaviour..

Time out

Using time out should only be used if the child understands why you are using it.

Because ?

1. It may be rewarding to an autistic child and so the problem behaviour is more likely to re occur

2. He may find it difficult to understand why he is receiving time out and so will not make the link between the behaviour and the consequences. So this will make time out less effective.

Using time out

Choose the room or place you are going to use. The idea is to keep him away from other people or away from whatever he was doing that sparked the behaviour.

Use it immediately after the behaviour occurrence.

You should start time out by using only a few minutes at a time, and then removing the child from the room. If the behaviour is still happening keep taking him back so he understands why he is in the room on his own

You must use it consistently.

Always reward for the first appropriate behaviour they do after time out.

Do not hold it against the child after you have completed the time out and he has calmed down because he will not understand your reaction. You need to get back to normal as soon as possible.

So as you can see you need to reward and reinforce desirable behaviour as much as possible, so as you can decrease undesirable behaviour. All the methods as described are only ideas, they may not work for your child but you may be able to use one or two of them.

There are several definitions of autism but they rarely state what a person with autism feels. It is only through personal accounts from individuals themselves who can express and describe their unique and often painful sensory world that we find out more. Everyday functions, which the majority of individuals take for granted, can for people with autism be negative and upsetting experiences. Behaviours presented by someone with autism will often be a direct reaction to their sensory experience. It is therefore understandable why they create rituals, or have self-stimulatory behaviours such as spinning, flapping and tapping, because this makes them feel they are in control and feel safe in their unique world.

"If I get sensory overload then I just shut down; you get what's known as fragmentation... it's weird, like being tuned into 40 TV channels."

Sensory integration

Ayres (1979, in Smith Myles et al, 2000) defined sensory integration as 'the organisation of sensation for use'. It involves turning sensation into perception.

The central nervous system (brain) processes all the sensory information sent from various sensory systems in the body and helps to organise, prioritise and understand the information. From this it is able to action a response: these may be thoughts, feelings, motor responses (behaviour) or a combination of these. Throughout our bodies we have receptors, which pick up on sensory stimuli. Our hands and feet contain the most receptors. Most of the time the processing of sensory information is automatic

The sensory systems can be broken down into six areas. These can be divided into two main areas: hyper (high) and hypo (low) sensitivity. However, it is important to remember that the difficulties/differences may for some individuals fall into both areas.

Balance (vestibular) system

Situated in the inner ear, this provides information on where our body is in space and its speed, direction and movement, all in relation to the pull of gravity. It is fundamental in helping us to keep our balance and posture. For an individual on the spectrum, difficulties/differences may be:

Hypo

*

the need for rocking, swinging, spinning.

Hyper

*

difficulties in activities which include movement, such as sport

*

difficulties in stopping quickly or during an activity

*

car sickness

*

difficulties with activities where the head is not in an upright position, or where feet are off the ground.

Body awareness (proprioception) system

Situated in the muscles and joints, our body awareness system tells us where our bodies are. It also informs us where our body parts are and how they are moving. For an individual on the spectrum difficulties/differences may be:

Hypo

* proximity - standing too close to others/not understanding personal body space

* navigating rooms - avoiding obstructions

* bumping into people.

Hyper

* difficulties with fine motor skills, manipulating small objects (buttons, tying shoe laces)

* moves whole body to look at something.

Smell (olfactory) system

Processed through chemical receptors in the nose, this tells us about smells in our immediate environment. Smell is a sense that is often neglected and forgotten about. It is, however, the first sense we rely upon. For an individual on the spectrum difficulties/differences may be:

Hypo

* some individuals have no sense of smell and fail to notice extreme odours

* some people may lick things.

Hyper

* smells can be intensified and overpowering

* toileting problems

* dislike of individuals with distinctive perfumes, shampoos, etc.

"Smells like dogs, cats, deodorant and aftershave lotion are so strong to me I can't stand it, and perfume drives me nuts." Gillingham, G. (1995). page 60

Sight (visual) system

Situated in the retina of the eye and activated by light, our sight helps us to define objects, people, colours, contrast and spatial boundaries. For an individual on the spectrum difficulties/differences may be:

Hypo

*

may see things darker, lose features, lines

*

for some they may concentrate on peripheral vision because their central vision is blurred; others say that a main object is magnified and things on the periphery become blurred

*

poor depth perception - problems with throwing and catching, clumsiness.

Hyper

*

distorted vision occurs and objects and bright lights can jump around

*

fragmentation of images, as a consequence of too many sources

*

focusing on particular detail (sand grains) more pleasurable than looking at something as a whole.

"... she was Mrs Marek, a face upon which light danced maniacally, turning her into more of a cartoon than a human being. Welcome to Toon town... I'd like you to enter this torture chamber I call my kitchen and meet my wife who is a 3D cartoon." Gillingham, G. (1995). page 51

Hearing (auditory) system

Situated in the inner ear, this informs us about sounds in the environment. It is the most commonly recognised aspect of sensory impairment. For an individual on the spectrum, difficulties/differences may be:

Hypo

*

sounds may only be heard with one ear, the other ear either only having partial hearing or none at all

*

the person may not acknowledge particular sounds

*

enjoys crowded noisy places, kitchens, bangs doors and objects.

Hyper

*

volume of noise can be magnified and surrounding sounds distorted and muddled

*

inability to cut out particular sounds - difficulties concentrating

*

they may have a lower hearing threshold, which makes them particularly sensitive to auditory stimuli, for example hearing conversations in the distance.

Their hearing impairment can have a direct effect on their ability to communicate and may also affect their balance.

"Do you hear noise in your head? It pounds and screeches. Like a train rumbling through your ears." Powell, J. (1995, in Gillingham, G. 1995) page 41

Touch (tactile) system

Situated on the skin, the largest organ of the body, it relates to touch, type of pressure, level of pain and helps us distinguish temperature (hot and cold).

Touch is a significant component in social development. It helps us to assess the environment we are in and enables us to react accordingly. For an individual on the spectrum difficulties/differences may be:

Hypo

*

holds others tightly

*

has high pain threshold - temperature/pain

*

self-harming

*

enjoys heavy objects on top of them.

Hyper

*

touch can be painful and uncomfortable and they will often withdraw from aspects of touch, which can have a grave effect on their relationships with others

*

dislike of having anything on hands or feet

*

difficulties in brushing and washing hair

*

only likes certain types of clothing or textures.

"Every time I am touched it hurts; it feels like fire running through my body." - Gillingham, G. (1995). page 3

Taste (gustatory) system

Processed through chemical receptors in the tongue it tells us about different tastes - sweet, sour, bitter, salty and spicy. Individuals will often have restricted diets as a result of their taste buds being extra sensitive. For an individual on the spectrum difficulties/differences may be:

Hypo

*

likes very spicy foods

*

eats everything - soil, grass, materials.

Hyper

*

some flavours and foods are too strong and overpowering for them

*

certain textures also cause discomfort; some children will only eat smooth foods such as mashed potatoes or ice-cream.

Additional sensory difficulties

Synaesthesia

This is a rare condition, separate from autism, which some individuals on the spectrum say they experience. This is when confusion in the sensory channels occurs. A sensory experience goes in through one system and out through a different system. For example an individual hears a sound (auditory system) but sees colours (visual system).

Possible strategies

A greater understanding of the sensory world of individuals on the spectrum allows you to help them develop in a more comfortable environment.

The following ideas and strategies will hopefully help when trying to create a comfortable environment for an individual on the spectrum to avoid their senses being overloaded.

General points to remember:

Awareness

Knowing that sensory dysfunction may be the reason for the problem, always examine the environment.

Be creative

Use your imagination to come up with positive sensory experiences and/or strategies.

Prepare

Always warn the individual of possible sensory stimuli they may experience, eg loud crowded places.

Sensory integration therapy

Sensory integration therapy involves the gentle exposure to various sensory stimuli. The aim of this therapy is to strengthen, balance and develop the central nervous systems processing of sensory stimuli. Delacato (1974), who introduced the concept of Sensory Integration Therapy, focused the therapy on the five core sensory systems - vision, taste, smell, auditory and tactility. Today, occupational therapists continue to focus on these areas, as well as incorporating the vestibular and proprioception systems, when creating and planning a schedule of activities for an individual.

Balance (vestibular) ideas

Hypo

* encourage activities which help them develop their vestibular system - rocking horse, swing, roundabout and see-saws.

Hyper

* break down activities into small steps, use visual cues such as a finish line or prompts.

Body awareness (proprioception) ideas

Hypo

* position furniture around the edge of the room to make navigation easier

* put coloured tape on the floor to indicate boundaries

* use the arm's-length rule.

Hyper

* threading activities

* lace boards.

Smell (olfactory) ideas

Hypo

* use strong-smelling products as rewards and to distract them from possibly inappropriate strong-smelling stimuli (faeces).

Hyper

* use unscented detergents or shampoos, refrain from wearing perfumes, make environment as fragrance free as possible.

Sight (visual) ideas

Hyper

* reduce fluorescent lighting by using deep-coloured light bulbs instead

* sunglasses

* create a work station in the classroom: a space or desk with high walls or divides on both sides to block out visual distractions from the front and sides

* use blackout curtains.

Hypo

* increase the use of visual cues.

Hearing (auditory) ideas

Auditory Integration Training (AIT)

In the early 1980s Dr Guy Berard created a machine that tests and exercises individuals auditory system. This approach believes that behaviours are a consequence of difficulties in the auditory system. By producing and altering various sounds the machine is able to use its auditory filters to maximize the volume without causing discomfort. The aim is to train the auditory system and balance its input. Research into this approach is very limited. For further information see contacts/recommended reading.

Music therapy

The benefits of music therapy have been recognised, and it is often used with individuals on the spectrum. Music therapy provides individuals with a unique opportunity to communicate, interact and express. For further information see contacts/recommended reading.

Hyper

*

shut doors and windows - to reduce the external sounds they have to deal with

*

prepare them before they go to a noisy place or crowded situations

*

ear plugs

*

Walkman

*

create a work station.

Hypo

*

use visual cues to back up verbal information.

Touch (tactile) ideas

Hypo

* weighted blankets

* sleeping bags.

Hyper

* warn the child if you are about to touch him or her; always approach him or her from the front

* remember a hug may be painful rather than comforting

* gradually introduce different textures - have a box of materials available

* sllow the individual to complete the activities themselves, enabling them to regulate their sensitivity (eg, hair brushing and washing).

Sensory rooms

Sensory environments are aimed at providing individuals with the opportunity to stimulate, develop or balance their sensory systems.

They are located mainly in specialist schools or hospitals so access is quite limited. However, many families have chosen to adapt a room in their home to create a space for sensory stimulation or reload.

Hulsegge and Verheul (1986, in Pagliano, 2000) developed the concept of the sensory room in the Netherlands. Drawing from the work of Clark (1966, in Pagliano, 2000) who established the idea of 'SNOEZLEN' rooms, this is a combination of two words, to 'smell' and to 'doze'. The terms more commonly used in the UK are sensory rooms or multisensory environments.

Rooms or sensory spaces can take various forms, for example white, dark, sound, interactive, water, softplay or garden. Their main functions tend to be therapeutic, educational and relaxation, all in relation to development.

Equipment used in the rooms varies depending on the type, function and needs of the individual using it. The following list gives examples of equipment to provide stimulation for all sensory systems. Stimuli can include soothing music, vibrating cushions, fibre optics, mirror balls, bubble tubes, waterbeds, tactile walls, disco lights and projectors to name just a few. Equipment can be set up using switches, pressure, sound and movement which then activate a piece of equipment in the room. The child comes to recognise cause and effect.

The reported benefits of sensory rooms at present come mainly from personal experiences and observations, as there is only a limited amount of research.

Professionals who can help

Occupational therapist - they play a fundamental role in sensory difficulties by designing programmes and often making adaptations to environments to ensure individuals are able to live as independently as possible.

Sensory impairment team - accessed through local social and health services, these teams specialise in sensory difficulties. Although they are not autism-specific some local authorities do cover individuals on the spectrum.

Speech and language therapist - often use sensory stimuli to encourage and support the development of language and interaction.

Music therapist - use instruments and sounds (auditory stimuli) to encourage and develop the sensory systems, predominantly the auditory system.

Examples of problems

Problem - possible sensory reasons - ideas

* Picky eater - sensitive to taste or texture, maybe unable to feel the food around mouth - slowly introduce different textures around the individual's mouth, eg flannel, toothbrush, foods, introduce small portions, change texture of the food, purée it. Encourage activities that involve the mouth, such as whistles, bubble wands, straw painting.

* Chews on everything, including clothing and objects - may find this relaxing, enjoys the tactile input of the item - latex-free tubes, straws, hard gums (chill in fridge).

* Smearing - may like the texture in their hands or be hypo sensitive to smells - try and introduce similar materials such as jelly, cornflour and water.

* Refuses to wear certain clothes - dislike the texture or pressure on their skin, turn items inside out so there is no seam - remove any tags or labels; allow them to wear clothes that they are comfortable in.

* Difficulties getting to sleep - may have difficulty shutting down senses, in particular visual and auditory - use blackout curtains, allow child to listen to music to cut out external sounds, weighted blankets.

* Finds concentrating in the classroom difficult - may have too many sensory distractions: too noisy (talking, bells, chairs scraping the floor), lots of visual stimuli (people, pictures on the wall), may also find holding a pencil uncomfortable (hard/cold) - position them away from the doors and windows, use furniture in the room to create an area free from distraction or if possible an individual workstation, try different textures to make the pencil more comfortable.

it could also be just stimming,she may enjoy your reaction or voice modulation,she may enjoy the ripping sound that the items make and when you are stopping it she is then snapping.

My non verbal autie loves rippingg, we have a big cardboard box full of old papers old clothes (already cut a little for easy ripping)and old cards.

he sits for hours just ripping,yes there is a mess but it is a happy mess.

I'm Mike. I am sorry and empathize with you very much. My son is 8 soon, and is mostly not verbal in a functional way, and is not toilet trained. However, these tow issues pail in comparison to the violence he is capable of without any warning. He is all smiles and cute one moment, then the next thing you now we all have to lock ourselves in various rooms like bathrooms and stuff until he calms down. I usualy do not allow my 2 healthy kids to have friends over unless under extreme supevision.

We (my little family) NEVER go to family parties together. (no thanksgiving, christmas, easter, cook outs, nada) We cannot go on family vacations at all anymore.

I wanted to write to you because I feel the same desparation. The hardest part is that I truly do love him. I look into his eyes and see such a handsome kid, whose has gotten the shaft. I worry about the future, and don't know where will he live. Will he live with me forever? What if his violence becomes a true danger to us and his siblings when he gets big and strong? He already is strong enough that it takes a good amount of effor to ward him off. (To the point where we lock ourselves in various rooms)

One time we had a babysitter that was knowledgable enough that she tried to take him some times. Howefer, she had to call us on our cell phone4 because my son was attacking her. We told her to lock herself in the bathroom until we get back.

There are alot of people on these sites with great ideas, but in my case it all just feels like too much. I don't feel like there is anything I can but survive. My wife simply believes he will be made well by Jesus Christ at any moment, and she truly believes this. I have rejected God completely throughout this entire process, and am not expecting any help. One of my bigger concerns is the crash that my wife is going to have some day. When I talk to her about it she says "that not's going to happen". In other words she does not even entertain the possibility that a miracle is not coming, right around the corner.

I'm sorry. I'm sure this post does not help too much. I feel the same desparation as you. It actually helps me to just feel the pain, and to not expect much.

Post edited by: Mick2g0, at: 04/25/2008 12:03