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Hello and welcome to About ASD!

I am a 35 year old married mum of two boys aged 4 and 2, my eldest boy has an autistic spectrum disorder (ASD). This blog will be filled with everything I have learnt since his diagnosis and our current life filled with pictures, puzzles and paperwork.

About ASD

I have wanted to write a blog for a while now but always felt I didn’t have the right subject or enough time, but since my son was diagnosed with an autism spectrum disorder (ASD) I have found a subject I am passionate about and have lots of useful information to share about.

What is my blog for?

I feel strongly about the benefits of sharing information and I have spent many hours on other people’s blogs listening to their experiences to help me with mine.  I want to share with you everything I have learnt about autism so far and the things that have helped us.

I hope to share practical information on how I have gone about implementing things like PECs (Picture Exchange Communication System) and help to get  through paperwork like the DLA (Disability living Allowance) form and the EHCP (Education Health and Care Plan). My son is non-verbal so I will write about speech and language and the different phases of PECs, different therapies or resources we have looked at and tried such as Attention Autism and Social Stories, also sensory activities and messy play which both boys love although I hate cleaning up afterwards.

The first thing I added is a glossary to explain all the acronyms and terms relating to autism in young children.

 

Who am I?

I am a 35 year old married mum of two boys, the youngest is 2  and the eldest is 4. We live in the West Country between Bristol and Bath having moved here ten years ago, I love food and I am constantly on a diet or eating too much cake, I also love travelling but with two little ones that hardly happens now so it is lots of day trips instead. I stay home with the boys in the day and work part time at a local supermarket in the evenings.

Disclaimer

This is a personal blog, I am not an expert and every child is different, I can only share what has worked for us and hope that it is informative and useful to others getting to grips with autism in young children.

I have also learnt with my son that what works one day may not the next, so having a lot of information and things up your sleeves makes a huge difference.  I really want to provide some support for parents and others out there working with children with ASD.  As I am not a professional and am only offering advice I am not responsible for actions taken as a result of information or advice on this site, please consult professionals (i.e. GP, Teacher, Health Visitor) you have access to where relevant.

I am only human and may well make mistakes, if this happens please let me know as I will be happy to amend them.  The content of this website is my own opinion and is protected by copyright. No portion of this website may be copied or replicated in any form without the written consent of the website owner.  However I am very happy for you to link to the site.  I am also not responsible for the content of websites that I have linked to or that link to this site.

There are adverts on this site and I do not endorse the products or services advertised.  Having said that I do use affiliate links within the content of some posts.  What is an affiliate link? Essentially it is a link to a product within a post (it should say that it is an affiliate link).  If you follow these links and make a purchase I will earn a small amount of commission.  This is at no additional cost to you and only used so I can cover the cost of hosting this site.  I will only provide affiliate links to products that I have used and genuinely recommend.

 

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The Autism Show 2018

Saturday 16th June 2018, Excel, London So this is my second visit to The Autism Show having attended last year.  Once again it delivered on interesting speakers and lots of stands full of information.  I met some lovely people and now have plenty of new things to try or find out more about.

Glossary

Everything new in life seems to come with a new language, autism spectrum disorders are no different and come with tons of confusing terminology and acronyms.

Here are some of the common ones that I have come across with very brief explanations, I will also link to more information when it is available.

I could have used this a year ago so I hope it is helpful to you. However if you are in a meeting or with a group and people that are using terms you don’t understand please ask what they mean, most people will be happy to explain it for you. 

 

ABA – Applied behavioural analysis: this is the use of interventions based on behavioural analysis.  An intensive and interactive approach usually on a one-to-one basis.  It is used to teach basic and social skills in a systematic manner to create a change in behaviour.

ADOS – Autism Diagnostic Observation Schedule: a tool for assessing and diagnosing autism. It is a semi structured assessment looking at social interaction, communication and play for individuals suspected of having an autistic spectrum disorder.

ASD – Autistic spectrum disorder: Everyone with autism has different traits and different aspects of autism.  Autistic spectrum disorder / ASD is an umbrella term that covers all types of autism, it is sometimes referred to as autistic spectrum condition.

Asperger Syndrome OR Asperger’s: An autistic spectrum disorder that usually presents with people having a higher level of intelligence, often without specific learning difficulties.  People with Asperger’s tend to have difficulty with social interaction and non-verbal communication.

Attention Autism: an intervention often used in relation to speech and language.  Developed by Gina Davis, Attention Autism is a series of stages that intend to encourage spontaneous communication by using highly motivating and visually engaging activities.

Autism: A lifelong developmental disability.  It is a spectrum condition that affects people differently but often includes difficulties with social communication, social interaction, rigidity of thinking and sensory processing difficulties.

Behavioural therapy: An umbrella term for therapies that attempt to identify and change habits or behaviour that is unwanted.

CAF – Common Assessment Framework: a standardised cross agency assessment to identify a young child’s additional needs and plan a co-ordinated approach to meet those needs.

CAMHS – Child and Adolescent Mental Health Service: an NHS service that assesses and treats young people with a range of behavioural, mental health and emotional difficulties.

Carer’s Allowance: Financial support from the UK government for people who spend at least 35 hours per week caring for someone else. The person being cared for should be in receipt of either Disability Living Allowance, Personal Independence Payment (PIP) or Attendance Allowance.

DLA – Disability living Allowance: Financial support from the UK government for people with a mental or physical disability to provide assistance with personal care or mobility needs.

DWP – Department of Work and Pensions: A UK government department responsible for welfare / benefits, pensions and child maintenance payments.

Dyslexia: A learning difficulty in relation to reading writing and spelling.

Dyspraxia: A developmental disorder which affects co-ordination and planning difficulties.

Early Bird: A training and support programme offered to parents and carer’s of young autistic children.

Echolalia: When a person repeats what has been said to them or repeats noises, it can be immediate or delayed.

Educational Psychologists: A psychologist that supports children and young people with difficulties relating to education and learning to enable them to participate in school or early years settings.

EHC Needs Assessment – Education Health and Care Needs Assessment: An assessment carried out by the local authority to see if a child or young person has additional educational, health and social needs that would require putting an Education, Health and Care Plan in place.

EHCP – Education Health and Care Plan: A plan for children and young people that require additional support.  It identifies educational, health and social needs and sets out the support that is required to meet those needs. Once a plan is agreed with the local authority it is a legally binding document.

EPS – Educational Psychology Service: A service that provides assessment and advice to early years settings and other providers relating to children with additional educational needs.

EYFS – The Early Years foundation stage: An educational stage for learning, development and care of children under five.

GP – General practitioner: Local community doctor.

HV – Health Visitor: Registered nurses or midwives who work in the community to support children under five and their families.

Hypersensitive: this is when a person is highly sensitive and may have unusual or extreme reactions to touch, taste, smell, sounds. It is commonly linked to anxiety and stress. Also see sensory processing.

Hyposensitive: this is when a person is under-sensitive or underwhelmed by touch, taste, smell and sound and are likely to seek out additional sensory activity.  Also see sensory processing.

LA – Local Authority: local council

Makaton: A system of signs and symbols combined with speech to assist hearing people with communication or learning difficulties. Signs from British Sign Language (BSL) are used however BSL is different to Makaton as it is a language for the deaf community in the UK and is naturally evolving language with its own grammar and word order. Makaton is what Mr Tumble uses on the Cbeebies show Something Special.

Melatonin: A hormone that is released by the brain to control your daily sleep and wake cycle, it is thought that patterns of melatonin secretion may be irregular in children on the autism spectrum and it can be produced at the wrong time of day. Melatonin supplements are available on prescription.

Monotropism: A hypothesis that looks at attention tunnels and suggests that many autistic people are monotropic and tend to focus their activity intensely on a limited range of interests, also they can have difficulty shifting attention or focusing attention on more than one thing i.e. looking and listening at the same time may be difficult and changes in routine can be hard to cope with.

Needs assessment: See EHC Needs Assessment above

Non verbal: A person that communicates without spoken language. The term also refers to communication that is not speech for example body language, touch, pitch, tone, eye contact etc.

NT – Neurotypical: A label widely used in the autistic community to identify people not on the autistic spectrum referring to them as neurologically typical.

One Page Profile: A one page summary of what is important to a person and how they need to be supported, it is used as a summary and introduction to a person. Often used by educational settings or agencies working with young people in attempt to create a more person centred approach to supporting needs.

OT – Occupational Therapist / Occupational Therapy: This is a therapy to assess and assist people to carry out everyday activities that are essential to health and wellbeing which they may otherwise find difficult.  In the case of autism OTs may focus on fine motor and daily living skills to help create independence for that individual.

Paediatrician: Doctors that specialise in children.

PDA – Pathological Demand Avoidance: A behaviour profile seen within individuals on the autistic spectrum (although some believe it is a separate condition to autism).  PDD presents as extreme avoidance of everyday requests, demands and expectations, the behaviour is based in anxiety and a need for that individual to be in control.

PDD – Pervasive developmental disorders: This is the diagnostic category that autism spectrum disorders falls within along with four other disorders all characterised by developmental delays in socialisation and communication. Technically not a diagnostic label although sometimes used for young children when there is a hesitation to diagnose a specific PDD such as Autism.

PDD–NOS – Pervasive development disorder not otherwise specified: This is an old diagnostic category which now falls under autistic spectrum disorders. PDD-NOS was often used in the past when an individual displays some or most of the characteristics of autism but did not meet the full criteria.  In the past it has also been referred to as mild autism.

PECs – Picture Exchange Communication System: A functional communication system based on applied behaviour analysis (ABA) used for people with difficulties relating to speech and language.  It uses pictures which are exchanged with ‘communicative partners’ and teaches how to communicate what they need before moving through different phases of functional communication.

Preopeoception: Body awareness, the sense of your own body in space without using touch or sight. It relates to body positioning, knowing where your limbs are in relation to your body and surrounding space, motion and equilibrium.

Resource base or unit: An education provider based within a mainstream school that is specifically for children with additional educational needs, some specialise specifically for children with autism.

SALT – Speech and Language Therapist: A specialist that provides assessment and treatment for individuals with difficulties and delays in speech, language and communication.  They also work with individuals who have difficulty eating, drinking and swallowing.

SEND / SEN – special educational needs and disability: A legal term that details needs of a child who has a disability or learning difficulty which makes it harder for them to learn than other children of the same age.

SENDCO / SENCO – Special educational needs and disability co-ordinator: The individual responsible for the day to day special education provision at a school or early years setting, it is their responsibility to ensure appropriate provision is accessible to meet the needs of children with special educational needs at that establishment.

SENDIP – Early years special educational needs, disability and inclusion panel: A panel of individuals with expertise in special educational needs set up to promote inclusion, it considers requests for funding and service provision relating to vulnerable children and children with special educational needs.

SENDIT – Early years special educational needs, disability and inclusion team: A team working for the local authority that support and challenges early years settings in relation to special educational needs, disability and inclusion.  This also includes Area SENCO’S that work with the provider based SENCO’s.

Sensory Processing: Children with autism can be over or under-sensitive to sounds, light, texture, smell and other sensory input.  Sensory processing issues happen when the brain has difficulty organising information from the senses.  Also see Hypersensitive and Hyposensitive

SLT – Speech and Language Therapy: The provision of treatment and care for individuals with difficulties relating to speech, language and communication.

Social services: local government services that have an obligation to safeguard and promote the welfare of vulnerable children.  They can offer a wide range of services to families.

Social Stories: Descriptions (often with visual aids) about everyday activities or events that detail specific information relating to the situation and what to expect.  They were devised by Carol Gray to assist people with autism to understand and improve social skills.

SPACE: A training and support programme offered to parents and carer’s of young autistic children.

SPD – Semantic pragmatic disorder:  A child with SPD does not develop semantic skills (understanding use and meaning of words) and pragmatic skills (how we use language, what to say when and how to say it to others) as expected and has difficulty understanding language socially.  SPD is now generally seen as a continuum of autistic spectrum disorders.

Statement – statement of special educational needs: A document that sets out a child’s special educational needs and how to support them.  Statements have now been replaced by Education, Health and Care Plans (EHCP) and all children who already have a Statement will have it transferred to an EHCP (see above).

STIM – Stimming: Self stimulating behaviour, usually the repetition of sounds or physical movement it is common in people with autism spectrum disorders.  It is someone doing something to give themselves sensory input.  There are many different types of stimming and many reasons for why people are stimming.

Symbolic play: Is simply pretend play.

TAC – Team around the child: This is a meeting that will bring together different agencies / professionals that are all working with a child so that everyone is working towards the same goals and sharing the relevant information with each other. The aim is to provide a co-ordinated approach to delivery of services for young people.

TEACCH – Treatment and Education of Autistic and Related Communication Handicapped Children: An approach widely used in UK to teach independence, coping strategies and social skills training.  It is based on identifying an individual’s skills and building on them.

TOP – Targeted outcome plan: A regularly updated plan that identifies targets for a child within an early years setting.  It includes the long term outcomes with short term targets to meet these outcomes alongside strategies and activities that will be used to meet these targets.

TSF – Transition support funding: Funding for early years settings and the subsequent school from the local authority to support a child with additional needs in their transition to school.

Vestibular: The sensory system that supports balance and spatial orientation.