Think before you printGeneral notes
While filling in this form think of the very worst times you’ve had with your child. It’s a very negative experience but will be worth it. Perhaps when it’s done, write yourself a list of the good things so as not to get too downhearted!
Think about other children you know of the same age, and the help your child needs where they don’t. The help they need has got to be more than that required by an equivalent aged child.
Remember some of the questions will overlap. Don’t be afraid to repeat yourself over and over again if necessary. If you run out of space complete the question on a separate piece of paper and return with the form.
It may be useful to keep a DLA diary for the next time you have to complete the forms. Make entries under the different questions when you’ve had a particularly bad episode, otherwise you will forget.
Also mention at every stage the impact all your AS child’s behaviour is having on the rest of your family. Keep thinking of the worst times.
Use quotes from school reports/reviews, or from your child’s statement, or collect witness statements from others who may have seen/experienced difficult events with your child.
When you’ve completed the form, don’t forget to take a copy.
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Parts 1 – 3 are self-explanatory.
Part 4 – About the child’s illnesses or disabilities
List any diagnoses you may have for the child:
e.g Asperger’s Syndrome; ADHD
List any medicines given to the child.
Part 5 – More about the child
Self-evident
Part 6 – Walking outdoors
Probably irrelevant for AS
Part 7 – If the child needs someone with them when they are outdoors
Here you must think of the worst experiences you’ve had with your child outside. They do not have to be that recent.
Examples.
Has no sense of fear, or danger, no idea of risk/consequences, cause and effect, or they may have irrational fears for example of dogs, other people.
Unpredictable behaviour requiring constant supervision.
Could run out in front of traffic. Needs to be reminded, which is not normal for a child of his age.
Could wander off if not kept an eye on.
Could find something else of interest and go and investigate.
Think about what your child’s like shopping, in town centres, busy roads, when out walking the dog. It’s often very difficult shopping with a child with AS – what with the sensory overload of lights, noise, other people. They may not understand that things need to be bought, that they cannot just help themselves. They may fiddle and play with machinery and electrical equipment in the shop – e.g. tills, escalators, lifts, shelving. In supermarkets the trolleys can sometimes turn into vehicles in their eyes…
Do they sometimes get fixated on something i.e roadworks and refuse to move.
Perhaps they like climbing which could be dangerous.
AS children are prone to be socially naive and may not recognise inappropriate approaches from other people.
Moods can change suddenly, making them prone to potential violent outbursts in public places.
Your child may be fearful of fast moving vehicles or the noise of traffic may cause sensory overload.
Your child may be slightly clumsy. Have you had to take him to hospital after accidents – e.g. falling.
Your child may be averse to lighting and/or music/general noises in towns, supermarkets etc. causing unusual disruptive behaviour.
They may find it difficult to use old knowledge to create new knowledge.
Part 8 – Someone keeping an eye on the child
Why the child needs someone with them
Use the examples given.
Is your child prone to violent behaviour?
Perhaps they are unable to understand, acknowledge the consequences of their behaviour, which could place them and others in danger.
The problem of stranger danger. Perhaps your child has an obsession with trucks. What may happen if a truck-driver asked your child if he wanted to look round his truck.
Your child may not be aware of danger and could easily be distracted.
Have the police ever been involved?
Has anyone else had to intervene when your child’s been out of the house? E.g. Does your child get into confrontations with members of the public or security guards, shop assistants.
Do you need to watch your child when he’s in the company of other children? A lot of AS children are unable to play-fight and games can turn into blood-baths with either your child or the victim being the instigator.
Your child may be picked on by others if they dress in a peculiar way, or never wash or change their clothing.
Perhaps they misinterpret simple social interactions which leads to them being inadvertently rude. The situation may then escalate if you are not present.
How many days a week does the child need someone with them?
This could be 7 days a week.
How much of the day do they need someone with them?
This could be all day, perhaps only when they are out.
Tell us roughly how long they need someone with them each time during the day.
Put the maximum time down
Why the child needs someone awake with them
Is your child easy to settle down at night or does he tend to get up in the night. What may he get up to in the night if the rest of the household is asleep?
Does he abscond, leave the house during the night?
Your child may need someone with them to remind them to be quiet for neighbours, other members of the family/household.
They may like to play music really loudly, unaware that the whole road can hear it, especially as they may also like to open all windows and doors at the same time.
How many nights a week does the child need someone to be awake with them?
Put down the maximum time. Could be constant i.e. 7 nights a week.
Tell us roughly how long they need someone awake with them during the night.
Put the maximum time down.
Part 9 – About the child’s development
Has the child’s development of physical and sensory skills been delayed?
This may be irrelevant for AS children.
Has the child’s development of learning skills been delayed?
Your AS child may find it particularly difficult to follow basic instructions.
He may exhibit inappropriate behaviour for his age.
He may need constant prompting and encouragement, before and during the event, to carry out the most basic of tasks such as cleaning, dressing, washing.
He may also be unable to process emotions correctly which may result in behavioural problems, violence, as these basic feelings cannot be vocalised leading to intense frustration.
Has the child’s development of social skills been delayed?
Particularly relevant for your AS child.
AS children find it incredibly difficult to relate to their peers, which can result in loneliness even depression. Can also lead to bullying from peer group.
Your child’s school may have picked up and commented on concerns relating to his social skills and relationship with his peers.
Your child may not understand levels of play. Play-fighting can become aggressive.
Your child can be disruptive in groups of other children; over-, or hyper-active; even slightly dictatorial.
He may be very argumentative and not accept “no” as an answer, resulting in violent behaviour.
Noisy behaviour can be very tiresome, especially if your child is prone to making the same constant noises i.e engine noises.
Your child may not be able to follow instructions – particularly if your child is currently fixated with another task – a typical AS trait of being unable to stop and start different tasks.
Does someone need to help the child develop through play?
Your child may need to be directed to more suitable activities in order to distract him from otherwise unacceptable behaviour.
e.g your child may have found a roll of sellotape and thought it would be a good idea to leave a trail of it all round the house; he may have found some wax crayons and thought of another good idea – to put them in the fire; he may start taking all your electrical equipment apart; etc etc.
Part 10 – Waking, getting up and going to bed
Tell us about the help the child needs to wake up or get up or go to bed.
Your child may not see the need to get up in time in the morning in order to go to school. This may also be difficult if they refuse to go to sleep at a suitable time the night before.
If your child attends a special out of county school, a taxi may come every morning to pick him up. The taxi driver may not be au fait with your child’s needs and leave before they’ve even got out of bed.
Your child may refuse to get in the bath and then may refuse to get out, once absorbed.
Your child may have strange sleep patterns and difficulty with sequencing can make getting up in the morning a process that requires constant prompting.
Stress getting to sleep may lead to a stressful, unsettled night, leading to heightened stress levels the following morning.
Part 11 – Washing and bathing
Your child may not think cleanliness and personal hygiene are particularly important.
They may have an aversion to, or fear of water.
Your child may be fixated in another task and unwilling to abandon this which could lead to violent outbursts when persuaded to bath.
Has your child ever got into the bath with his clothes on? May seem funny once, but over a period of time…
AS kids may not see the consequences of personal hygiene. They may know the theory i.e. teeth not brushed leads to fillings and tooth decay but the reality as relates to them may be slightly different.
Bathing and having their nails cut may be times for stress and temper tantrums.
Lack of personal hygiene may cause offence to other people. There may also be related health issues arising from poor self-care. Friendships may be compromised. This unawareness of hygiene can also be related to eating stale, mouldy food etc...
Think about the worst episode you’ve had trying to get your child bathed and washed ready for bed.
Part 12 – Getting dressed or undressed
Does your child require special clothing? They may not like the texture of some clothes, which can feel irritating, too tight, constrictive. And the outward manifestations of sensory problems can often lead to rages.
Do they destroy clothes they don’t like?
If not prompted, would they wear the same clothes day in, day out?
Perhaps they wear unsuitable clothing for the time of year, or just plain unsuitable clothing – i.e. too small, too big, dirty.
They may have difficulty due to motor clumsiness with doing up buttons, zips, tying shoelaces etc.
Your child may not like being helped to dress as he may have an aversion to being touched.
They may resist wearing school uniform.
Part 13 – Help with toilet needs
Probably not necessary for AS kids, although there may be some who have issues with soiling and bed-wetting and confrontations that could arise from this not to mention the extra time and money spent washing.
Part 14 – Communicating with other people
Difficulties understanding other people
Your child may be unable to read normal, habitual social cues, which could lead to problems, altercations, behavioural problems.
Difficulties being understood by other people
Your child may be unable to read social situations; may lack discretion and make personal comments while out in public.
He may lack appropriateness in communicating (e.g. swearing), and struggle to recognise the needs of others in conversations. Interactions may lead to altercations.
Your child may be unaware that in certain situations it is necessary/polite to be quiet (e.g. in church, cinema, library, theatre).
Eye contact, volume and tone may all be problematic.
Your child may be unable to verbalise emotions which are instead exhibited behaviourally leading to tantrums, violence, aggression.
Encouragement the child needs to communicate with other people?
Your child may refuse or be unable to communicate. As above he may be unable to verbalise emotions, leading to disruptive behaviour.
They may only be willing to communicate if it is on their terms i.e. they are talking about a subject of their choosing.
Part 15 – Eating and drinking
Your child may need encouragement to eat, use knife and fork properly, not spill food and drink everywhere.
Perhaps you like to go out to eat. What is your child like in the restaurant? They may be unable to sit and wait for the meal, or wander off, or fiddle with things in the restaurant.
They may have food intolerances.
Part 16 – Help with medication
If your child needs to take medication, they may have an aversion to swallowing tablets. They may also refuse their medication.
This may lead to tantrums etc.
Part 17 – Therapy
Your child may have speech and language therapy; social skills lessons – most children have this, so put this down.
You may attend Family Therapy sessions.
What do they do at your child’s school with him that may qualify as therapy?
Part 18 – Help with medical equipment
You will probably be saying no to this question, although it does mention special clothing, so if your child needs to be bought special clothes because of sensory issues, then mention that here again.
Part 19 – Blackouts, fits, seizures or something like this
Probably not.
Part 20 – The child’s mental health
Remember to think about the worst day you’ve spent with your child.
You can have a field day in this section! Use the examples given.
Perhaps your child gets frustrated if things don’t turn out as planned, leading to disruptive/aggressive behaviour.
Your child may get very angry, throwing things, slamming doors, being aggressive towards other people. A confrontation, however small and innocuous, may lead to this. They may try to damage property, which could be school or other private property.
Have the police had to be called/involved?
Has your child tried to self-harm?
Perhaps you can quote examples of this kind of behaviour from school reports/reviews.
Note the consequences of your child’s extreme behaviours – i.e. injuries, police, school exclusions, physical restraints, interventions of any kind.
Your child may suffer from OCD or depression.
How often this happens
This section here probably highlights the crux of your child’s problems and so will be constant and on-going.
You will need to be constantly vigilant that your child is calm, not over-stressed or too frustrated and so in turn does not get agitated, aggressive, disruptive. That his daily routine is being adhered to as much as possible, and that he is not putting himself or others in danger.
Think of the worst day you’ve had and how often there were incidents and how long it took to restore order.
Part 21 – Movement and co-ordination
Your child may be extremely clumsy; insist on running, crawling or hopping everywhere.
Part 22 – Moving about indoors
Your child may have an aversion to fluorescent lights, or lighting, noise of some kind that you may have had to modify.
Part 23 – When the child is in bed at night
Your child may find it difficult to settle at night. He may be constantly getting up.
Part 24 – Help the child needs when they go out during the day or in the evening
e.g. when they go out during the day or evening:
- Indoor wall climbing, 1-2 days a week, once a day for 2 to 4 hours. Help they need – Supervision from an experienced climber and encouragement to go in the first place.
- Cycling – 1-3 days a week, once a day for 30 to 60 minutes. Help they need – supervision and encouragement.
Part 25 – Who would you like to tell us about the child’s illnesses or disabilities?
You’ll probably want to put down the name of your GP, consultant, or whoever you think has the best knowledge of you child’s illnesses.
Part 26 – Anything else about the way the child is affected by their illnesses or disabilities
Here is your opportunity to explain just how challenging your child’s behaviour is. Don’t be afraid to repeat yourself. This is just a summing up. Reiterate as much as you like.
You may want to mention that although your child has a high IQ and has no actual physical or visible disability which can almost make things worse when out in public, that he is unable to transfer his intelligence to general real-life situations.
Insight or sagacity are not related necessarily to intelligence in the case of a child with AS. He may be unable to make safe and sound judgements based on past events. There may be no link between cause and effect.
Useful intelligence may be lacking.
Perhaps you don’t have any problems in certain situations because you avoid them – put examples of this down here.
Mention here anything you’ve been unable to mention elsewhere. You can always use a separate piece of paper if there’s not enough room.
Part 27 – 35 self evident
Part 36 – Statement from someone else who knows the child
May be worthwhile getting a teacher, although sometimes they will not be able to as part of the school’s policy; a social worker or a medical professional that deals with your child as long as they know the problems you are having. Otherwise a relation who shares care. Remind them also to think of the worst, most demanding behaviour they have seen.
Part 37 – 42 – self evident.
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Now take a copy.
Pour yourself a large glass of wine and take some time to think of the best moments you've had with your child. Although demoralising and draining, it can be quite a cathartic process.
We hope this is helpful to you. If, however, you disagree with anything, or think we've left something out, which we no doubt have, please let us know by sending us a message. We are not aware of the existence of a similar resource and we are not asking for any payment, just that you return to our site regularly.
Please note that these are only suggestions, but are all based upon several successful claims for DLA.
We are also conducting several questionnaires/surveys on the reality of bringing up a child with Asperger's Syndrome. Click here - we need your views!
Good luck, asteens
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