The Autism Resource Kit

Welcome to The Autism Resource Kit.  Here you will find information and resources to help you on your journey living with Autism, whether as an individual with Autism or as a parent /carer, a family member or friend.

Contents
What Is Autism
Characteristics
Early Signs of Autism
Diagnosis
Explaining The Diagnosis To My Child
Getting The Right Help and Support
Nursery and Pre-School
Junior School
Comprehensive School
The World of Work and Benefits
and much more to follow shortly…
 
 

What is autism?

Autism is a developmental condition that affects people for the whole of their lives.

Autism affects people differently and no two people with autism are the same which is why it is called a spectrum condition.

Autism is a condition that affects 1 in 68 people across the world.  In the UK approx. 700,000 people have a diagnosis of Autism.

Autism is a condition that affects people in all walks of life and it does not discriminate between intelligence, race, religion, social class, health or upbringing.

It is thought that Autism affects more males than females, however in recent years we have seen that more and more females receiving a diagnosis as our understanding of autism develops and our diagnostic and support services improve.  Autism can present very differently in females to males due to females masking the social side of autism better than males making it more difficult to notice and diagnose.

Currently there is no known cause of Autism.  Autism is a condition that is present before birth.  You cannot catch Autism, and it is not caused by what you do as a parent/carer either.

Despite what we may read or see online, there is no known cure for autism.  With the right support from early years onwards autistic people can lead typical lives and have families and careers just like anyone else.

Autism is not a learning disability however around half autistic people are diagnosed with a learning disability too as well as other diagnosis such as:-

  • Dyspraxia
  • Irlene Syndrome
  • Epilepsy
  • Obsessive Compulsive Disorder (OCD)
  • Attention Deficit Hyperactivity Disorder (ADHD)
  • Anxiety
  • Tourette’s or Tics
  • Sensory Processing Disorder (SPD)
  • Oppositional Defiance Disorder (ODD)
  • Pathological Demand Avoidance (PDA)

Other issues can also include a narrow repetitive diet and difficulties with sleep.  More information and help with  these issues are covered in our workshops.
 
 

Characteristics

We may hear the term “The Triad of Impairments” being mentioned in relation to autism.  The Triad was a term coined by Dr Lorna Wing in the 1970’s to describe the characteristics of autism.

More recently (since the change in the diagnostic criteria DSM-V) commonly we now look at four key traits of autism which are:-

Communication –

  • Difficulties with verbal and non-verbal communication.
  • Expressing themselves and understanding the communication of others.

Social interaction –

  • Difficulty understanding the actions and intentions of others.
  • Difficulty with managing and maintaining friendships.

Imagination –

  • Difficulty making transitions and choices.
  • Rigid thinking and repetitive behaviour.

Sensory –

  • Can have difficulty processing the sensory information in the world around them particularly sight, sound, smell, touch and taste as well as proprioception and vestibular.
  • Sensory experience can cause physical pain to people on the spectrum making things that neuro typicals (a neuro typical is someone who does not have autism) take for granted each day like taking a shower, making eye contact or brushing our teeth a very painful experience.

 

Early signs of autism

The signs of autism will be different for everyone and will become obvious at different stages in a child’s life – even into adulthood where many people today are being diagnosed, however, you may notice some of the following signs if your child is autistic

Communication

  • No speech
  • Late development of speech.
  • Repetitive sounds.
  • Monotone speech
  • Unable to start or maintain a conversation
  • Will only talk about their interests.

Interaction

  • A lack of response to their name and sounds.
  • A lack of emotional response to things and people.
  • Rejecting or not seeking physical interaction – the touch, hug, or kiss of a parent.
  • Avoiding eye contact.
  • Unaware of personal space.
  • Not engaging in play with others
  • Will pay in isolation or parallel play.
  • Lack of expression when talking and engaging with others

Behaviour

  • The need for routine.
  • “Obsessive” behaviour and attachments toward objects/toys.
  • Frustration when things don’t go their way or things change.
  • May shy away from sudden noises and touch.
  • May have a strong reaction to smells and light
  • May struggle to develop friendships
  • Spend more time in adult company or on their own rather than with others their own age
  • May have an extreme reaction to things being changed or demands placed upon him/her.
  • Difficulty engaging in personal care routines such as bathing/showering and cleaning teeth.
  • Difficulty falling asleep/staying asleep/establishing a consistent sleep routine.
  • Dietary difficulties – narrow diet, seeking strong tastes/flavours or bland tastes/flavours.

This is not an exhaustive list; however should you feel your child displays several of these characteristics then contact your GP/Health visitor for further advice and guidance.
 
 

Diagnosis

There is no exact right or wrong age to go for a diagnosis of Autism.  Diagnosis of autism is common around the age of 5-7, however children are diagnosed around the age of two and it is becoming more common that adults in their 20’s, 30’s, 40’s and 50’s are receiving diagnosis of autism.

  • The diagnosis process

You as your child’s parents may have already noticed subtle differences in your child’s development.  These differences in development may have also been noticed in nursery, at school and or by your health visitor too.

At this point you can make an appointment to speak to your GP.

The GP will need information from you in regards to your concerns.  You can use the details of the above section “Early signs of autism”  to help structure your evidence to the GP.  Other things to think about is the duration and severity of the early signs of autism and also the impact it has on your child and the wider family.

The GP will ask you about the following:-

  • Antenatal and perinatal history.
  • Developmental milestones.
  • Relevant medical history.
  • Whether there is a history of autism in the family.

There will be occasions where your GP does not feel the early signs of autism are enough for a diagnosis.  The GP should give you a period of “watchful waiting” where you go back and continue to monitor your child.

If you are unhappy with this decision you can:-

  • Re refer your child to the GP.
  • Look back at the evidence you have gathered and add more examples.
  • Ask for support from school/nursery – use ALENCO if possible (ALENCO is the schools Additional Learning and Educational Needs Coordinator).
  • Refer your child to a different GP – some GP’s may have had more training than others and will be able to recognise the signs that others may miss.
  • Join a support group – some are online, others meet up every month or two weeks. These groups are a good source of support and information and various support groups can be found on The Autism Directory here.

Following your visit your GP may refer you to specialist teams including psychologists, Psychiatrists, Occupational therapists and Speech and Language therapists for further assessment.
 
 

Explaining the diagnosis to my child

Explaining a diagnosis of autism to a child can be a minefield.  Some children would like to know why they feel different to others and can be a very positive thing, where as other children may not want to know about their autism as they may feel further alienated through their autism.

You as a parent are in the best position to know when is best.  Link in with key professionals in your child’s life for example social worker, teacher, and school support staff if they are working with your child and find out if your child is starting to ask questions or making comments about “feeling different”.

Top tips for discussing diagnosis

  • Think about who the best person to talk about your child’s diagnosis could be. This could be you, an older sibling, member of extended family, a teacher or a support worker.
  • Choose the right time. This is when you are both calm, relaxed and there are no other pressures around for example, a change in routine, appointments, big transitions or exams
  • Be honest and factual
  • Its ok to say “I don’t know” if your child asks a question about their diagnosis that you aren’t sure of… in many cases this can help to build up your relationship and nurture trust.
  • Be positive about the diagnosis and focus on your child’s strengths.

Your child may go through a series of emotions following being told about their diagnosis.

There could be relief, sadness, anger, fear, excitement or no reaction at all.  Your child may have further questions and will probably need time to process the information.  Further questions may come at the time you are talking, or hours, days or weeks later.

Leave it up to your child to decide on how, when or if they tell their siblings, extended family and friends.  You will need to contact school and let them know but again it is up to your child how many people know (as in class mates).

  • Supporting my families understanding of diagnosis

Families can be a fantastic source of support for you and your child.  They can be a rock of emotional and practical support for you throughout the diagnosis process and potential hurdles you may face as your child moves from junior to high school and into adult services.

Some family members may take time to adjust to a member of their family having a diagnosis, they may even reject the diagnosis.

There may be occasions where your immediate family are not supportive, this could be for a number of reasons, for example they not live close to you.  Family doesn’t have to mean family… in the communities we work with families can be forged through working with neighbours, friends and support groups, or a person who shares the same understanding as you.  Many of the strongest relationships we have seen have been developed in local support groups between people who are experiencing the same things as you are.
 
 

Getting the right help and support

(further information to be updated here shortly)

Local services

GP’s

Further assessments

 

Nursery and Pre-School

(further information to be updated here shortly)

Statementing

Working with schools and ALENCOS

Home schooling

Potty/toilet training

Sleep

Eating and drinking

Social interaction

Sensory

Services

Developing communication

 

Junior School

(further information to be updated here shortly)

Maintaining skills

Siblings

Choosing a school / home schooling

Statement of needs

 

Comprehensive School and College

(further information to be updated here shortly)

Puberty

Transition

Travel training

CV’s

Relationships

 

The world of work and benefits

(further information to be updated here shortly)

CV upkeep

Interviews

Job applications

Benefits and rights

Access to work

Socialising

 

 

If you need any help and support please call us on 01443 844764 .

 

helping those living with autism get the help they need