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“It does not have to be about tragedy or pain or loss. Bearing an autistic child is not losing that child. It’s gaining a very special new son or daughter” – Jasmine Lee O’Neill, a mute autistic savant who is a poet, writer, illustrator and musician. As yet there are no medical tests to diagnose autism. An accurate diagnosis must be made on observation of the child’s communication, behaviour and development levels. It has been proven worldwide that early, accurate diagnosis coupled with early, intensive intervention increases the child’s opportunity for positive development and success.
DSM-V
Where do I go if I think my child may have autism? Diagnosis
What is Aspergers Syndrome? Pathological Demand Avoidance Disorder Access Autism
Glossary of Terms
Frequently parents don’t suspect a problem with the development of their child until 18 months to 2 years or older. Initially, if your child is still being seen by the Child Development Team at your local Health Centre, you should express your concerns to them and ask for a referral to a Developmental Paediatrician. If your child is older, you can go to your GP and ask for the same referral. If deemed necessary you may firstly be referred to a hearing specialist to rule out other developmental delays associated with language and communication disorders including deafness. If your child is older still and at school you need to ask the School Principal to arrange for the child to be assessed by an Educational Psychologist.
How early can a child be diagnosed? Autism Spectrum Disorder is generally diagnosed from the age of 2 ½ years. This is because some of the skills or emerging skills that the assessment team are looking for would not be apparent in a typically developing child younger than this. At Irish Autism Action we know that parents often report being concerned about lack of emerging skills in their children at a younger age. If this is the case there is the CHecklist for Autism in Toddlers (CHAT) tool that you can use with your primary healthcare worker to indicate if you need to be concerned about the possibility that you child may have a social-communication disorder.
Assessment of need for children born after 1st June 2002 On June 1 2007, Part 2 of the Disability Act 2005 becomes law for children under 5 years of age. Under Part 2 of this Act, children with disabilities have a right to: An independent assessment of their health and educational needs arising from their disability An assessment report A statement of services they will receive Make a complaint if they are not happy with any part of the process
Who can apply for an assessment? Any parent who feels that their child, born after 1st June 2002, may have a disability can apply for an assessment. An application can also be made by a guardian or a personal advocate assigned by the Citizen’s Information Board (call 1890 777 121 or check out www.citizensinformation.ie).
What is an Independent Assessment of Need? An independent assessment of need is an assessment of the full range of your child’s needs associated with his or her disability. After this you will receive an assessment report detailing your child’s health and educational needs and the services required to meet those needs.
Who will carry out the assessment? Your first point of contact is your local Assessment Officer who is responsible for your child’s assessment. Each Local Health Office has an Assessment Officer. They can assist you with your child’s application and help support you through the process. The Assessment Officer is responsible for issuing your child’s assessment report. The assessment is independent, based solely on your child’s disability needs and is carried out regardless of the cost or the availability of services. All assessments will be carried out in line with the standards developed by the Health Information and Quality Authority. You will be encouraged to take part in your child’s assessment.
Where do I apply? Applications must be made in writing on a standard form which is available from your Local Health Office. Call the HSE infoline 1850 24 1850 or check out www.hse.ie for a list of Local Health Officers in Ireland. Click here to download an application form
How long will it take? Your child’s assessment must start within 3 months from when the completed application form is accepted by the HSE. It must be completed within a further 3 months from the date on which the assessment commenced. In exceptional circumstances, the assessment may take longer than 3 months, but must be completed as soon as possible.
What happens next? When the assessment is complete, an HSE Liaison Officer will prepare a service statement for you. The service statement will say what services and supports will be provided to your child and will be prepared within 1 month of the assessment being completed. You will receive your child’s assessment report and service statement at the same time.
What can I do if I am not satisfied? If you are not happy with the assessment or service statement, you can make a complaint to the HSE, will arrange for your case to be reviewed. You can complain if: – The Assessment Officer decides that your child does not meet the definition of disability according to the Act and you disagree. The assessment is not done in line with the standards set by the Health Information and Quality Authority; An assessment is not started and completed within the agreed timeframes; You believe that the content of your child’s Service Statement is inaccurate or incorrect. The services in your child’s service statement are not being delivered. If you are unhappy with the outcome of your complaint you can appeal to an independent appeals office. The determination of the appeals officer is final and may only be appealed on a point of law to the High Court.
Further information Applications must be made in writing on a standard form which is available from your Local Health Office. Call the HSE infoline 1850 24 1850 or check out www.hse.ie for a list of Local Health Officers in Ireland. Contact details for your local Assessment Officer and Liaison Officer can be found in the Your County section of the website. Text taken from Assessing your child’s needs Disability Act 2005 – HSE publications
What happens once my child has been referred? Once seen by the Paediatrician or Educational Psychologist and they agree that there are areas of your child’s development which warrant further investigation, your child will be referred again to an Autism Team, sometimes located within the Health Service Child and Family Centres, sometimes within a hospital. This team is typically made up of a Clinical Psychologist, Speech and Language Therapist, Occupational Therapist and Social Worker. The Psychologist and Therapists will then conduct an assessment of your child using recognised diagnostic assessment tools coupled with their observations of the child’s behaviours.
How long will this take? Currently the waiting lists in Ireland are anything from 9 to 18 months before your child can be seen by the Autism Team. When seen, the diagnostic procedure can take another few months with the Therapists wishing to work with the child on several occasions.
Is there any other way to obtain a diagnosis? If you wish you can obtain a diagnosis privately. A Clinical Psychologist or Educational Psychologist can reach a diagnosis using recognised diagnostic assessment tools. The IAA has set up the first National Diagnostic Centre, The Solas Centre, in Multyfarnham, Co. Westmeath. The multidisciplinary team of Clinical Psychologists, Educational Psychologists, Speech and Language Therapist and Occupational Therapist deliver a full and accurate assessment within the Epsen Act2004, which leads to diagnosis that takes into account the particular needs of a person with ASD, and details support to be provided. The Solas Centre aim to provide a diagnosis within 3 months of referral. For more information on the Solas Centre phone 044 9371680, or email your enquiry to
[email protected].
What are these ‘recognised diagnostic assessment tools’ – why are they important? These assessment tools are a form of checklist for the professional(s) involved with the diagnosing of autism. Because the autistic spectrum is so wide, ranging from severe behaviours to mild behaviours, across different areas of development, it is necessary in diagnosis to be clear about the nature, severity and incidence of the behaviours, to ensure that the diagnosis is as accurate as possible and that subsequent recommendations made are as comprehensive as possible. It is important that these recognised assessment tools are used in the giving of a diagnosis as it will be on the basis of their universal acceptance that the diagnosis will be one which cannot be dismissed by another body, and the diagnosis can also remain unchallenged in another country which uses the same tools for diagnosis. At the time of publication the most widely recognised diagnostic tool by health professionals in Ireland is the DSM IV. Other valid assessment tools include the Portage Development Checklist, The PIP Development Chart, The Vineland Adaptive Behaviour Scales, The Autistic Continuum diagnostic schedule, and the Gilliam Autism Rating Scale. New diagnostic tools include DISCO and ADOS.
So I have my child’s diagnosis – what now? When you receive the diagnostic reports they will list recommendations for therapies and for educational supports. With this information you will be able to refer you child to the relevant services and apply for an educational placement and special educational needs (SEN) supports. You will also then be able to apply for any state benefits you/your family may qualify for. Please refer to our sections on Education, Therapies & Interventions and Benefits for further information. There are currently long waiting lists for some services for those on the autistic spectrum and a shortage of professionals of all disciplines. However, Irish Autism Action provides information, supports and advocacy to assist you. Please refer to our section What We Do for further details of supports we can offer to our members.
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Irish Autism Action is now known as Autism Ireland as of November 27th 2017