What is Autism?
Autism is a neurological difference that many people are born with which affects how they experience the world around them and how they communicate with others.
Autism is described as a “spectrum” disorder. This means that the symptoms and characteristics of autism can present themselves in a wide variety of combinations and can range from mild to severe.
Opinions are much divided on what defines autism. Parents may not recognise the developmental delays that are obvious to a professional as “milestones” which should be achieved by a certain age. Professionals may feel that while a child presents with a communication delay, they could not be classically autistic as they make eye contact and share affection with their loved ones, during the assessment process.
There is also a belief that many children with autism have a learning disability that precludes intellectual achievement. However, there are others who work with autistic children in specialised settings who will tell you it is possible to be very autistic AND very intelligent. They may require intensive teaching, but they will all have the ability to learn.
It is also very important to remember that much of which is distinct and at times challenging about autism is very manageable with the right help. This is a developmental delay; it is very likely that with the right diagnosis and support, they will catch up.
What is Asperger Syndrome?
In 1944 Hans Asperger, a Viennese paediatrician, first identified a pattern of behaviours and abilities, predominantly among boys. These included a lack of empathy with other, solitariness, little ability to form friendships, one-sided conversations/odd speech, intense interest in a particular subject and clumsy movements. This was the first basis for the identification and diagnosis of children with Asperger’s Syndrome.
Significantly, children with Asperger’s Syndrome do not meet the diagnostic criteria for Autism; however, most researchers and clinicians agree that Asperger’s Syndrome is part of the spectrum of Autistic Disorders.
People with AS vary greatly in abilities, background and age as many do not receive a diagnosis until adolescence or adulthood.
Asperger Syndrome is a manifestation of autism found on the Autistic Spectrum. This condition presents with a more subtle of difficulties, yet has enough distinct features to be classified separately.
An issue which sets the person with Asperger Syndrome apart from those affected by the more well know forms of autism, is that there are usually minimal learning disabilities, to the contrary, people with Asperger Syndrome often have average or even above average intelligence. Because of this factor, with the right support, these children can often be successfully integrated into mainstream education. Many adults with Asperger Syndrome do lead independent lives, whilst others will require lifelong supervision and services.
Research undertaken by Dr Christopher Gillberg (1991), implies that Asperger Syndrome affects 36 per 10,000 of people with Autistic Spectrum Disorder and interestingly, the ration of boys to girls is 10:1, whereas with the other forms of autism the ratio is 4:1.
Autism Liaison Nurse: The Autism Liaison will be one of the first point of contact for the family with a member of the HSE. When your child receives a diagnosis the Liaison Nurse may arrange a home visit to discuss your child’s needs, services and entitlements. The LN role is in the form of support to a family once they receive a diagnosis.
Psychologists: The Psychologists are most often involved in the diagnosis and assessment period as part of the Multi-disciplinary. Intervention can include parent training, development of behavior management strategies, links with schools and other professionals
Speech & Language Therapy: Speech and Language Therapists will assess, diagnose and deliver therapy to people with communication difficulties. They can develop an individualised programme of therapy to work on your child’s strengths and weaknesses with language. There are many different ways for children with autism to learn to communicate if they are non-verbal such as sign language (Lamh), PECS (picture exchange communication) or speech generating devices (e.g. apps on an ipad including Proloquo2go, MyCoughDrop, Superspeak, Graceapp).
Occupational Therapy assess and develop programs to support your child’s motor skills, coordination and self-help skills including eating with utensils, toilet training, brushing teeth, pencil holding, riding a bike, dressing etc. They can also develop and implement a sensory integration program for children with sensory issues (problems with what they see, hear, feel, taste and smell).
Applied Behaviour Analysis Therapy
ABA is widely recognised as an effective behavioural intervention for people with autism. In particular, ABA principles and techniques can foster basic skills such as looking, listening and imitating, as well as complex skills such as independent life skills, social skills, and addressing challenging behaviour. ABA is not funded by the HSE but can be availed of through the HSE home tuition scheme if a therapist is also registered by the Teaching Council or self-funded by parents.
Developing your toolbox
Whether you are waiting for a diagnosis or you already have one, there are always things you can do to help yourself and your child. The journey of Autism can quickly become overwhelming and lonely. However there are many parents who have gone before you and contributed something to developing a world that better understands how to face the challenges of autism. Try to stay focused on the positives and begin to assemble your “toolbox” – knowledge, understanding and strategies to help your child develop their potential. Such as …..
Even if your child is non-verbal, it’s important to work on teaching them a functional way of communicating – that is using a word, sound, sign, picture or app to ask for the things they want. The following behavioural approach video’s show some important steps in teaching your child to ask for the things they want.
Although the videos demonstrate how to teach spoken word, the same principles apply if you are teaching sign language or picture exchange. Instead of only speaking the word, you could model the sign, physically help your child to make a sign or hand you a picture before they get the thing they want.
Information on LAMH, PECS and the Hanon program (offered by the HSE) can assist you in learning about how to teach your child to communicate. Speak to a qualified and experienced SLT on what the best method of communication is for your child. Getting advice from a professional applied behaviour analysis therapist (BCBA) can also be extremely useful in developing strategies to get your child talking. With any professional you see, check to see that they have relevant training and experience with autism and implementing the strategies they suggest.
Finding a Speech and language therapist
IASLTPP http://www.iasltpp.com or phone 01 8787959
The Speech Center Wexford
Phone: 085 2121021 – Email: firstname.lastname@example.org
2. Redefining success – at home and in the community.
It can often feel like a daunting task, bringing your child out and about in the community. They may be reluctant to leave the house or refuse to participate in activities with other people. They may have challenging behaviour or find it hard to follow your instructions in new situations. For many parents bringing your child out and having it end in disaster can make you feel like a failure.
What you can do:
- Use strategies to increase the likelihood that they will want to stay in a new setting. Break up the skill into smaller steps and focus on the next logical step for your child e.g. coming in the door and staying for a minute when previously they only came to the door.
- Make it worth their while. The technique of pairing – associating new situations with access to things your child wants e.g. getting a crisp every minute for sitting beside you (in a new setting) or being allowed to take a few of their favourite toys with them.
- Fail. Learn. Practise. Practise. Practise
- Find someone to support you and stay positive. It may take weeks to get your child even comfortable to enter and stay in a new situation. Join CAN activities and speak to other parents about their experiences and learning. Find a professional to help you devise and implement a plan to get your child successful in participating to the best of their ability.
3. Become your child’s best teacher.
Along this journey you will meet many professionals from doctor’s to teachers, psychologists to therapists. However you will always and forever remain the expert and most dedicated spokesperson for your child. Arm yourself with knowledge, with research, with strategies how to best help your child learn (and in the process educate the world around them).
https://www.middletownautism.com/ (training days offered throughout Ireland on a range of challenges associated with autism
http://www.peatni.org/ Northern Ireland Parent led charity organising training for parents and professionals on a range of challenges associated with autism
University College Cork offers courses in Autism studies and Living with Asperger