Autism

… Understanding Autism continued …

The National Autistic Society states “The definition of autism has changed over the decades and could change in future years as we understand more. Some people feel the spectrum is too broad, arguing an autistic person with 24/7 support needs cannot be compared with a person who finds supermarket lights too bright. We often find that autistic people and their families with different support needs share many of the same challenges, whether that’s getting enough support from mental health, education and social care services or being misunderstood by people close to them. We will continue to fight to make society work for autistic people”.

Autism Understanding Scotland states that “Autistic people are often seen as quite different from our peers. We usually have what is referred to as a spiky profile. This means we might excel in some areas and may struggle in others.”

For example, an autistic child may:

• hit some milestones at the same time as peers
• hit them early exceeding expectations for someone of their age
• be at a similar level as younger children in others
• do all of the above

An autistic adult may be a professional, highly skilled in their field, yet struggle to carry out household tasks.

Here’s a few things autism is not:

• a disease
• a mental health condition
• something that will ever go away
• something that needs to be fixed or cured

It does not mean that autistic people are broken neurotypical people. It does not mean that they cannot be active, contributing members of society. Autistic people simply have a different neurotype, not a defective one.

Amazing Things Happen is a short video introduction to autism that seeks to raise awareness, understanding and acceptance among young non-autistic audiences:

Demand Avoidance:

PDA (Pathological Demand Avoidance) is widely understood to be gaining acceptance as a specific profile on the autism spectrum. Children with PDA do not present in what might be considered a ‘typical’ way for autism, as they can be sociable and very verbal. However, this profile includes vigorous resistance to everyday demands and the use of ‘social’ strategies as part of this avoidance. PDA individuals have autistic characteristics and also have many of the ‘key features’ of a PDA profile. The PDA Society has produced a short video to explain what Pathological Avoidance is. Their website includes information and advice for young people, adults, parents and carers including links to local support groups.

Further resources can be found on National Autistic Society website: Pathological Demand Avoidance (PDA)

Autism is a lifelong neurodevelopmental condition. Being autistic means that the individual can see and experience the world differently. This can affect their communication, social interaction, social imagination and sensory processing.

Communication:

Autistic people may have difficulty understanding, processing and using language. This can mean an autistic person may have good verbal communication however they have difficulty understanding body language, tone of voice or nuances that accompany verbal language. For other autistic people it may mean they have no or limited verbal communication and are unable to express themselves verbally. Using communication aids such as pictures, object signifiers, sign language or communication apps can be very helpful tools to support people to express themselves.

Social Interaction:

Autistic people may find social interaction challenging as they have difficulty understanding or recognising other’s feelings and intentions including understanding their own emotions. The National Autistic Society identify some examples of what this can look like:

• appear to be insensitive
• seek out time alone when overloaded by other people
• not seek comfort from other people
• appear to behave ‘strangely’ or in a way thought to be socially inappropriate
• find it hard to form friendships

Social Imagination:

Autistic people may find it hard to imagine the world from other people’s perspective and have difficulty understanding that other people have different thoughts and feelings from their own.

Difficulty coping with:

• Changes in routine
• Spontaneity

Difficulty with:

• Organising thoughts, planning ahead
• Imagination: understanding consequences, predicting outcomes and imagining different outcomes
• Understanding and predicting danger

Sensory Processing:

Autistic people may process sensory information differently, this includes how they process touch, smell, tastes, sounds, light, temperature and pain. Being in an environment and trying to manage being over stimulated or under stimulated can be challenging and cause great anxiety for children and adults.

Some other problems are more common in children with autism, including:

• mental health problems (particularly anxiety and depression)
• attention deficit hyperactivity disorder (ADHD)
• unusual behaviour when separated from or reunited with people who provide care (known as ‘attachment problems’)
• sleep problems
• difficulties with movement (for example, clumsiness and tics)

Autistic children and young people may also have co-existing conditions such as:

• epilepsy
• problems with eyesight
• hearing problems
• intellectual disability
• ADHD

Distressed behaviour

Autistic children, young people and adults, may experience extreme anxiety, repetitive and restrictive behaviour, meltdowns & shutdowns. It is important to remember that this is communication and not “bad behaviour”. Some autistic children may behave in ways that put a lot of strain on you and your family. You may hear health professionals call some behaviours “challenging”.

Many autistic children and young people use a set of behaviours to help them manage their emotions and make sense of their environment. Sometimes they’re done for enjoyment.

Some things that can be linked to these behaviours include:

• being over- or under-sensitive to things like bright lights, noises, touch or pain
• anxiety, especially when routines suddenly change
• not being able to make sense of what’s going on around them
• being unwell or in pain

Common examples of behaviours are:

• Physically challenging behaviours – such as hitting, biting, spitting or pulling hair.
• Emotionally challenging behaviours – aggressive shouting or using derogatory language.
• Self-injurious behaviour – behaviour that harms the individual, such as head-banging, or biting hands or arms.
• Pica – which means eating things other than food. This can become self-injurious when an autistic person eats potentially toxic or sharp objects.
• Smearing – when an autistic young person smears their faeces on walls or objects.
• Pathological demand avoidance (PDA) – this is a behaviour profile within the autism spectrum that is characterised by resistance to everyday demands. What constitutes a demand can look different to every person.

But remember, these behaviours are not your or your child’s fault, all autistic children are different and not every day will be challenging or stressful.

The Challenging Behaviour Foundation has a lot of information for both parents and professionals to support them with practical advice on how to spot behaviours that challenge and what to do when it occurs.

The national charity Scope also produces information on challenging behaviour.

If, as a parent or carer you are struggling emotionally, your GP may be able to help. It’s important to take care of yourself in order to support your child. There are local and national organisations who provide support for parents/carers and siblings please see resources at bottom of the page.

Eating

As a parent the most satisfying thing is to see your child nourished and growing. A child refusing to eat or not eating a well-balanced diet is one of the most difficult things to contend with. Many parents of children and adults on the autism spectrum report difficulties with eating.

There may be several reasons for this but first and foremost it is vital to look at the person’s health and get a medical check to eliminate any serious illness.

It is then necessary to look at the individual profile of autism and how that may be impacting on eating habits and preferences. It will also be important to look at sensory issues as many people on the Autism spectrum have sensory integration difficulties and this may impact on their eating and environment. Some people on the autism spectrum are reported to have difficulties with food intolerances and allergies.

Some of the things that you may want to think about when looking at your child / adult in relation to eating are;

Examples of Health issues –

• Bowel problems
• Oral motor (drooling, tongue thrust, chewing, swallowing)
• Refusing to eat
• Sore throat
• Pica (crave and eat non food items)
• Teeth

If you have any health concerns always check with your GP or health professional (dietician) for advice on these matters. Look out for bowel problems being associated with drinking a large amount of milk and milk products like yoghurt, custard cheese or eating large quantities of bread or wheat products. This could indicate food intolerances.

A speech and language therapist may help with exercises for oral motor skills and advise on foods to increase chewing ability

Keep a food diary which will help to indicate routines likes/dislikes and intake of food and drinks. This can also be used to help motivate the person by drawing up a motivator checklist

Communication

• How do they communicate (can he express what he wants / likes / dislikes)
• Do they use a communication system
• Do they express when they are hungry
• Are they motivated by food

Help the person to communicate their likes and dislikes around food. You should consider objects; pictures and photographs (menus).

Communication systems should be devised at the level of communication skills the person has. A speech and language therapist may assess this and advise on the right level to pitch the support.

Social eating

• Do they follow a routine for eating
• Do they sit at the table, use cutlery, drink from a cup etc.
• Can they tolerate eating beside others

A good established routine with regular meal times around eating along with the right eating environment e.g. sitting down at a table or high chair if child is young, will help the person develop associations with meal times and accept this as part of the wider daily routine. It may be helpful to consider their favourite characters i.e. Thomas the Tank Engine, dog’s, cars etc to use in the routines to motivate them to attend.

Sitting position is also important. Some people have gross and fine motor problems fidget on the seat and this can be helped by cushions or rubber mats or lightly weighted waistcoat. An occupational therapist can help in assessing difficulties with coordination and provide supports around this.

Thinking around food and eating

• Are they only eating certain foods
• Are there certain foods they will eat and won’t eat
• Think about the textures of food
• Are the foods they eat certain colours, shapes textures

Some people may experience difficulties with transition (e.g. finishing playing to come to the table) or after experiencing sore throat or teeth problems which make eating difficult they find it difficult to re-establish a normal eating routine.

Sensory

• Are they averse to foods touching
• Are they only eating certain textures, colours, or shapes of food (this could also be thinking around food)
• Does the person have difficulty with the temperature of food
• Are certain smells causing retching or upset
• How is the food presented visually –some people cannot recognise foods e.g. banana looks different with the skin off and some people could be upset by this
• Do they only eat foods of similar tastes
• Do they register feeling of hunger or fullness?

If there is a problem with foods touching you could serve it on separate plates and gradually change to separate positions on the one plate then build on this so that your child can accept foods touching. Taking a gradual approach can be helpful and will allow you to see your child is progressing and can accept change.

Try and integrate different textures in small amounts e.g. finely grated cheese into potatoes on top of beans etc

If tastes are very similar gradually add sweet to sour but with the preferred taste being dominant.

Try and make the food visually motivating to the person. For instance an autistic child or young person who was obsessed with circles was able to be motivated to eat new foods by presenting them as food circles. He recorded on a chart the circles he liked and disliked for the future menus.

Remember that each person is different and they will need different strategies of support. Always check that there is no medical reason for an eating difficulties or problems. Use what motivates and interests your child in your support strategies. If possible, seek professional advice where you can but also bear in mind that other parents may have had similar experiences and can be a great source of support and inspiration. 

NHS Lothian have produced helpful tips for parents and carers, for Autistic children and young people with eating difficulties. Click on the image for the PDF.

ARFID (Avoidant/Restrictive Food Intake Disorder) and Autism, further information can be found here. 

Mental Health

Individuals with autism are more likely than others to suffer from a range of mental health problems (e.g. anxiety, depression).

These may be acute or chronic. A high level of anxiety is common in autism and this can manifest as:

• phobias
• separation anxiety
• obsessive compulsive disorder
• eating and sleep disorders

Differentiating symptoms: Obsessive compulsive disorder (OCD) may be confused with obsessions as part of autism.

• Obsessions within autism usually decrease anxiety and give pleasure to the individual
• Obsessions within OCD usually result in an increase in anxiety and have a ‘compulsive’ quality
• Eating disorders may be confused with ‘faddiness’ and the rigidity over food intake that is typical in ASD (e.g. only eating foods of a certain colour, texture or brand)
• Anxiety and the need for control may take ‘autistic’ rigidity over food intake to a dangerous level, even anorexia nervosa
• Obsessive interest in food and poor impulse control may lead to extreme over-eating

Identifying mental health problems in individuals with autism is particularly difficult.

The person with autism may have little self-awareness so the practitioner cannot rely on verbal reports and has instead to infer the mental health problem from behaviour.

Treatment

Best approaches stress a positive attitude to coping (teach coping skills and awareness):

• positive solution-focused problem solving, increase understanding
• cognitive behaviour therapy (CBT) (specially adapted for ASD – even for children)
• structured, predictable environments
• relaxation
• general – sensory; meditation; yoga; deep pressure; music
• specific – fold arms, close eyes, chant or hum
• aerobic exercise
• talking with others (significant others / peers)
• art / drama / music / occupational therapy

You can get additional information on our Wellbeing page

Safeguarding

The National Autistic Society have produced guidelines on Safeguarding young people on the Autism Spectrum. Click here for further information.

The Autistic Missing Person Protocol has been developed by Police Scotland in consultation with Scottish Autism and is being piloted throughout Lothian and Scottish Borders.

It is a simple risk reduction tool to help individuals, families, schools and other organisations assist Police in the event an autistic adult or child goes missing.

It consists of a form which contains vital information about sensory needs, communication abilities, responses and reactions, favourites places and a photograph with consent to share on social media (if needed). Click here for the form

The form can be passed to Police at the point the vulnerable child or adult is reported missing and avoids unnecessary delays in gathering information at a time of crisis. As well as keeping a copy of the form within the place of residence, consideration should also be given to have a copy within the school, work or any other service provider where the person may attend.

Sensory Processing

Autistic people may find it difficult to process every day sensory input. Any of the senses can be oversensitive or under sensitive or both at different times:

• Sight
• Sound
• Smell
• Taste
• Touch
• Balance (vestibular)
• Body Awareness (Proprioception)
• Synaesthesia

National Autistic Society has developed a detailed guide to explain this in more detail.

Here is a helpful PDF – Ways to help with sensory difficulty

Sleep

All parents expect a degree of disturbed sleep when they have young children. However for many parents of children and young people on the autism spectrum such problems can be extreme and can persist indefinitely.

Sleeping difficulties are very common in people on the autism spectrum. Disruption to sleep can arise for many reasons. Some examples are, anxiety, the need for a more predictable routine, confusion re time concepts, a poor understanding of the concept of sleep and confusion resulting from busy or cluttered sleeping environment.

Not all individuals on the autism spectrum will have sleep difficulties however many do. Some examples include difficulties settling to sleep, staying asleep, waking during the night, going back to sleep, child in bed with parent’s and / or waking very early.

Our experience of working with families where a child or young person is having sleeping difficulties tells us that there are solutions to many sleep difficulties. However things do not generally get better without focused attention. In our experience, children on the spectrum are less likely to “grow” out of these difficulties. Targeted and consistent support is likely to be needed in order to address understanding and to develop positive sleep routines and habits.

It is beneficial to all in the family if sleep difficulties are discussed professional/ support agencies contacted and solutions sought as quickly as possible.

Although it is advisable to intervene as early as possible in sleep issues the resilience of the family needs to be considered. Sleep is one of those areas where things can feel they are worse before they get better. It is therefore important that parents and other family members who may be willing to support parents feel ready to take it on. A contingency plan to ensure you get some rest, or that you have someone on hand to support you with other daily tasks is helpful and will allow you to focus.

If you have any concerns contact an appropriate professional agency experienced in sleep and the specific difficulties associated with the autism spectrum. Examples include Health Visitor, Sleep Scotland, and Scottish Autism (trained by Sleep Scotland).

It is critical to initially identify what the exact sleep problem is. Sometimes someone out-with the family can help with an objective opinion. When you are tired you can become overly focused on the impact of a problem rather than the root of the problem.

Each family circumstance is unique. Individualised sleep programmes should reflect this and should always take into account the needs of the individual that are associated with the autism spectrum. You therefore need to consider if you can follow through. It would be very unusual for any approach to have an instant effect so you need to feel you can commit.

There is no single solution to sleep difficulties. There are some principles that can support sleep such as:

A planned nightly routine. These benefit all within the family to make night and bedtime predictable.

Exercise and other highly stimulating activities should not be undertaken in the hours just before sleep. Children on the spectrum often have difficulties with self-regulation. This means that if there has been vigorous or exciting activity they may need support to return to a more relaxed, quiet state.

Think about communication relating to sleep and the night time routine. Using the individual’s communication system to support their understanding and expectations of sleep routine/ bedtime.

Keeping a detailed sleep diary can help. This should be kept for a fairly significant period e.g. 2- 3 weeks. The idea is to record key information such as, what the child did before bed, when they went to bed, how long did it take to settle, did they wake, how long for, did they resettle, etc. By keeping the diary for a prolonged time you can then begin to look for patterns. E.g. it may be that it is on a particular day of the week that most problems occur therefore there may be something concerning the child.

Parents and carers living in Scotland seeking support with their child’s sleep problems can contact sleepsupport@sleepscotland.org

For further information check the Sleep Scotland website.

Women and girls

Autism is a lifelong developmental condition that affects how people perceive the world and interact with others. It used to be believed that autism was largely found in boys and men. However, we now know that autism is more common in women than we thought. In 2015, the ratio of men to women accessing the National Autistic Society Adult service was approximately 3:1. There are different theories as to why men are diagnosed more often than women. One is that women and girls may be more socially aware and that they may observe and imitate others in order to mask their differences and fit in (Tony Attwood 2007). This effort to imitate others and hide autistic behaviour can be draining and stressful and may contribute to increased mental health problems in women with autism (Dale Yaull-Smith 2008).

Another theory is that the way autism is diagnosed is based on behaviour that is typical of men and boys. Girls are less likely to be diagnosed as children because they behave differently to boys and do not act in ways that are considered typically autistic. For example, they may be very quiet and may have a strong interest in animals or fiction, or have an imaginary friend.

Women are more likely than men to have had referrals to health services and they are more likely to have other conditions diagnosed, including anxiety, depression, personality disorders and eating disorders. Not receiving a diagnosis of autism spectrum disorder until adulthood means that some women may not receive the appropriate support they need.  “NHS Lothian Autistic Women patient information pack”.

SWAN

Scottish Women with Autism Network is an autistic-led Charity delivering services, information and support for and by autistic women and girls across Scotland since 2012.

They provide peer support for women and girls both virtually and ace to face, through social events, a Facebook page and a ‘friends of SWAN forum. For further information on how they can support click here.

Scottish Autism

Scottish Autism has an online support programme, Right Click, for women and girls with autism. This provides information on a wide range of subjects.

The Girl with the Curly Hair project

The Girl with the curly hair provides training and advice for women and girls by a young woman with ASD. Click here for more information.

Staffordshire Council have created a useful check list  explaining possible presentations of autistic young females.