Managing the diagnosis
Feelings and reactions
The emotional effect of a diagnosis can be overwhelming and even heart-breaking, at first. In some cases, people have compared the reaction and feelings similar to that of the grief process. It can feel like a lot to deal with and a lot to take in. It is a whole completely new set of rules, systems and things to understand which are alien to us in the beginning.
I often use the analogy: ‘for years you have been used to running on windows now you have to understand how an apple mac works’ – this will seem alien and unnatural at first and will get you to think about things in more depth.
Often when you have a new diagnosis you find yourself isolated and often people report that family members become distant and uninterested still believing your child or young person to be in control of their behaviours, or worst feel your child has developed ‘learnt behaviour’.
It is vital you get support as soon as you can – a great way to do this would be to pop into one of our family groups in either Aylsham or Thetford.
Feelings and reactions will differ with mums and dads reaction the most difference. You will experience emotions such as worry, sadness, grief, guilt or anger – or quite possibly a combination of the above. – This is natural and is a result of you being a neurotypical person being faced with an ‘autistic’ world.
A diagnosis often, however, can lead to more specialist support including medication, school support and extra funding. A diagnosis can also reaffirm previous feelings and thoughts. It can confirm that your child does have a neurological disorder and isn’t simply choosing to behave the way they are. It is often good to have a ‘concrete’ name for it, something you can use to explain things to other parents or family members, and something that people can read up on and gain understanding about.
Asking for support is the first and most difficult step. Admitting you don’t fully understand the diagnosis given is not a defeat, it is simply asking for the right support. At ASD Helping Hands we truly don’t believe in teaching you to ‘suck eggs’ but we have got a wealth of resources which are more targeted for people who need to gain a better understanding of their child or young person’s diagnosis.
Expectations and beliefs
Often people who are going through the diagnostic process or who are pre-diagnosis turn to the internet for advice and guidance. Unfortunately, the majority of the results on a google search are heavily Americanised and therefore do not reflect how we manage ASD diagnoses in the UK. You may have even started comparing your child or young person to those on message boards and online forums seeking those all-important confirmations that there is something to be concerned about.
Coping with others
Dealing with people, including professionals, who don’t yet know your child or your family can be a challenge. It is really difficult for some autistic individuals to meet new people and be able to converse verbally with them without further build-up. Often this produces difficulties when people are trying to assess your situation or make judgments of the wishes and feelings of Autistic individuals. You must try and keep adult involvement in your family consistent (although not possible always due to sickness and typically social care involvement). Professionals will need to build up a rapport and have a working understanding of Autism or you might be left feeling like your parenting is being questioned or being faced with questions around attachment disorders. Always keep a record of anything said by a professional, ask them to email you a record of any meeting (even if informal). Get a list of all professionals involved and outline which ones relate to health, social care and education.
Request the same GP handle the care of the Autistic individual – although this does not work for emergencies for the day-to-day care it is vital you do not have to repeat your history to every GP in the practice particularly if you have to bring the Autistic individual to see the GP. The appointment needs to be quick and to the point to avoid meltdowns.
You are on a journey of discovery. Your tour guide is the person who has the Autism diagnosis. Take hints from them and they will help you understand the way their brains work. Every day you will learn something new, bank it and move on. Some days everything you ever thought you knew will be thrown out the window, some day’s strategies will fail – you are a neurotypical adult and this is normal and not something to be frightened or worried about.
What is important is you are not alone and the team at ASD Helping Hands know what it’s like personally. All staff working for ASD Helping Hands has a connection with Autism. One of our workers has ADHD, our CEO has a husband with Aspergers and children with Autism, and our family support lead adviser-advocate has a partner with High Functioning Autism.
Getting Help and Support
In some instances, a Child in Need Section 17 assessment might be the only way to get your family access to the ‘funded’ services it desperately needs. This is because the criteria for the team that regularly offers respite to families is very high and the majority of our children and young people with autism and turned down for this service.
However, for your information find Short Breaks information here...
What is important is that you are aware that having a child or young person means you are entitled to an assessment of their need and if a need is identified then the county council must provide provision to meet that need.
You can find more about social services following this link - for families in Norfolk
It is so very important that your child or young person gets the right support in education. It can make a positive difference to a child or young person on the autistic spectrum. In Norfolk/Suffolk children with special educational needs fall under the SEN Code of Practice, the SEN regulations and the Children’s and Families Act.
A few key points
SEN support There is no requirement to carry out an Individual Education Plan but you can still request a ‘plan’ but there is little consistency across schools as to how this looks
For children and young people who require a higher level of support, there is the ‘Education, Health and Care Plan’ process – this can be requested by a parent, it doesn’t have to be requested by a professional or the school
ASD Helping Hands
Once you have gotten in touch via our referral systems, one of our volunteers will give you a call back to discuss your referral further. We will be asking for information about what support you need and how this can be delivered
At the initial contact we will look at:-
Issues with education
Issues in the home around boundaries and behaviours
Your understanding of Autism/PDA/ADHD etc
Your family needs
Give you more information and signpost you were appropriate
What we will never do is recommend courses that are purely for parenting, any course we recommend has been proven to be able to offer the specialist advice needed for the elements of an ASD that are the most difficult to manage.
We will give you recommended reading and assist with any involvement with the Early Help Family Focus teams or Social Services.