Autism & Carers
How to Manage - A Parent's Perspective
Help and advice from parents and individuals with Autism throughout Northern Ireland.
"Do I disclose my child has suspected ASD or has been diagnosed with ASD when applying for a place in a mainstream Nursery/ pre-school? Some parents can be anxious that a Nursery or Pre-school will refuse to admit their child because of the diagnosis. Often mainstream Nurseries/Pre-schools obtain extra funding for a disabled child so a diagnosis of ASD should not hinder your child being accepted into your choice of placement for your child. Furthermore if a school has reached its enrolment figure and is full there is a possibility of an extra placement being offered to a special needs child."
"Many parents feel despair when their child is diagnosed, they feel helpless and want others to fix things for them. The reality is we each have to fix things ourselves by getting involved, organising, planning and pushing to get help. No-one can help us, we have to help ourselves, but by joining with other parents we can get the strength and courage to do this. We mustn't forget that parents who organise are parents themselves, who are equally despairing and are doing their best. involved by helping others helps me cope. Don't be too submissive with professionals - don't be put off, stick at it until you get a diagnosis. Don't take no for an answer - mobilise to get services, join with other parents and be a strong voice. It will not only help ultimately your child, it will help all the other children who need services. You will feel better if you feel you can do something."
“I used to exhaust myself pretending to be normal. I did not dare to let others see me behaving differently. My only relief was road running in my local area because it was then that I could be in a world of my own without anyone feeling that they needed to “pull me out of it”. I was in my early 40’s before I broke the cycle of traumatic & drugged admissions to psychiatric hospitals when I realised I was different because I had Autism, not because I was mentally ill. I received my diagnosis of Autism and with professional counselling my faith, family support, friendship and information from Autism NI – I began the journey of discovery and appreciation of the uniqueness of my Autism. Above all knowledge and support helped me cope.”
Who Can Help You?
1. Self Help
In the end, every family is unique and every person with Autism manifests the condition in a very individual way. So don’t run to the internet for answers, advice, directions and support right away. Instead read (about Autism generally) and listen as people tell their own experiences. But in the end, measure all of this against the person – the individual with Autism. The intervention, the support and the services will be special to each individual.
The following services are just a guide to some of the contacts you might need. Access will, as always, depend upon resources!
There are a range of statutory services which can support you as a perent/Carer.
Health and Social Care Trusts' ASD Co-ordinatiors
Belfast Health & Social Care Trust
ASD Co-ordinator: Julie Walsh
Telephone: 028 9063 6608 Email: firstname.lastname@example.org
Northern Health & Social Care Trust
ASD Co-ordinator: Heather McCarroll
Telephone: 028 2766 1391 Email: email@example.com
South Eastern Health & Social Care Trust
ASD Co-ordinator: Alison Wilson
Telephone: 028 4461 6915/ 077 3412 9143 Email: Alison.Wilson@setrust.hscni.net
Southern Health & Social Care Trust
ASD Co-ordinator: Denise Carroll
Telephone: 028 3831 2805 Email: firstname.lastname@example.org
Western Health & Social Care Trust
ASD Co-ordinator: Sheena O'Roarty
Telephone: 028 8283 5983 Email: email@example.com
3. Voluntary (Autism Specific)
Website: www.autismni.org Telephone: 028 9040 1729
For more Autism Specific Voluntary Sector Charities, see below:
Supporting Living (Accommodation) and Floating Support (supporting people in their family home).
Telephone: 028 9079 1875 Website: www.autisminitiatives.org
PEAT (Parents Education as Autism Therapists)
Telephone: 028 9032 4882 Website: www.peatni.org
Action for Children
Telephone: 0300 123 2112 Website: www.actionforchildren.org.uk
Telephone: 028 9043 6400 Website: www.nowproject.co.uk
NAS (National Autistic Society) Northern Ireland
Telephone: 028 9068 7066
Middletown Autism Centre (Educational Advice)
Telephone: 028 3751 5750
4. Voluntary (General)
For information on General Voluntary Sector charities, see below:
Barnardos (Provides a pre-school ASD Specialist Service in Belfast)
Telephone: 028 9065 8105 Website: www.barnardos.ie
MENCAP (Regional advice & support i.e. Learning ASD and Disability).
Telephone: 028 9069 1351 Website: www.mencap.org.uk
Citizens Advice Bureau (CAB) (Advice e.g. benefits services)
SENAC (Educational Advice Independent)
Telephone: 028 9079 5779 Website: www.senac.co.uk
DARS (Educational Advice, Education Authority)
Point of contact: BELB (Belfast Education and Library Board)
Positive Futures/Challenge (Residential/Respite/Supported Living)
Telephone: 028 9147 5720 Website: www.positive-futures.net
Praxis (Residential/Respite/Supported Living)
Children's Law Centre (Freephone Advice Line for children and young people)
Freephone Advice Line: 08088085678 Telephone: 028 9025 5704 Email: firstname.lastname@example.org Website: www.childrenslawcentre.org
Lifeline Helpline Anyone of any age living in Northern Ireland can call Lifeline free of charge on 0808 808 8000 if they are experiencing distress or despair. The Lifeline helpline is open 24 hours a day, every day of the year.
There are a developing number of private providers of assessment, diagnosis and services in Northern Ireland.
Please consult your Statutory Services (Health & Social Care Trust) before engaging with any private practitioner or provider as resulting reports and recommendations may be considered invalid unless commissioned by the Statutory Sector directly.
The Private route may appear an attractive way to overcome lengthy waiting lists but unless the work is approved by your local Health Trust the result could be costly and frustrating for families.
6. Parent/Carer Support Groups
For a list of our Parent Support Groups, please Click Here