Advice for parents of newly diagnosed children

May 28, 2014

When my daughter was first diagnosed as being on the autistic spectrum, I wish I'd had access to the following information and I sincerely hope that it may help someone out there, keep their head above water:

 

1.  Get communicating

 

The most crucial thing parents of newly diagnosed children can do for their child is learn how to communicate with them in whatever means possible, irrespective of where they are on the spectrum.  This could be in the form of a verbalised sound, a finger point or a nod of the head, it doesn't matter how-we must find a way to keep the lines of communication open.

 

Many ASD children literally have their brains wired differently to the rest of us.  Many are visual thinkers which basically means that it's easier for them to understand pictures than the spoken word.  To take advantage of this buy yourself a set of PECS cards (Picture Exchange Communication System) which are flash cards that you can show your child to let them know what is going on i.e. you're about to go on a shopping trip, you're feeling happy, it's dinner time etc.  It also works both ways, so your child can use these to let you know what they want or are feeling.  Free printouts are available online to get you started and lots of other free resources available via a simple google search.  You can even buy a quick access set on a keyring for when you are out and about.

 

Last, but by no means least is good old fashioned speech.  Talk as much as you can to your child, narrate your whole day if need be, just make sure it's age appropriate so no baby talk for your older children.  Reduce the number of words you say to the most important few, exaggerate tones and annunciate consonants as ASD children tend to struggle in this area and need this additional help to get started.  Also, be as expressive as you can possibly be.  Using a colourful hand puppet for younger children is a fun change and can provide textural stimuli for your child to snuggle up to.  The key here is trying to make things as interesting as possible to encourage your child to engage with you.  From a scientific point of view, our children appear to be hypersensitive to certain things and require more stimuli in others.  Understanding speech is one of the areas where they simply need more to be able to register and comprehend what is being said. 

 

2.  Become an expert

 

It is shocking how many times I've attended meetings only to have people claiming to be "specialists" in autism trying to tell me what is best for my child.  Sometimes I have found that these individual's knowledge comes straight from textbooks and they have virtually no hands on experience at all.  You are well within your rights to ask someone what their level of expertise is, how many children/adults they have treated and the results of that treatment.  If you are really lucky, you will hit the jackpot and come across a real professional who absolutely knows their stuff.  Believe me when I say that you will spot these people a mile off and they are like gold dust in the industry, so keep hold of them!

 

How do you tackle this lottery when it comes to employing services?  Easy, you become an expert of your child yourself!  The spectrum, when it comes to autism, is so immense and children present in so many different ways that absolutely no professional out there can know your child as well as you can anyway.  Learn to have the confidence to talk about your child's condition and how it affects them.  Don't just make notes on the negatives but a strong focus on positives aswell as this should also form part of any therapy programme put in place.  How are they talented, what kind of music do they like, what textures, what makes them laugh?  Any programmes of treatment put in place at school should help tackle your child's areas of needs whilst strongly supporting their areas of interest! 

 

 

3.  Get empowered

 

Learn about your rights.  Obvious I know, but so often overlooked!  It's a harsh reality that if governments can get away with saving money and not providing resources, they will!  Get support from a charity or support group that champions the rights of families with disabled relatives.  Ensure that these organisations are fully independent i.e. they are not financially supported by the very authorities you will be challenging.  In my experience, the "support" groups that are funded by local authorities tend not to be so forth coming with vital information that will cost their benefactors money.  Who wants to bite the hand that feeds them after all!

 

Find out where you stand with regards to benefits for the whole family and also with regards to educational and theraputic resources your child is entitled to.

 

4.  Get organised

 

Keep all documentation.  You will be shocked how often you will be forced to prove your child's disability and difficulties they experience day to day just to access the most basic facilities.  Make sure you put away every letter from every doctor, consultant, therapist and teacher.  Any promise of resources or therapy should also be logged and filed away safely for future reference.

 

5.  Get support

 

The best place for this is clearly through friends and family.  If this is not available (as is sadly too often the case), your local authority should be able to help through funding like direct payments or respite care schemes like short breaks.  In the UK, this will involve a meeting with a social worker for a "core assessment" to decide what level of respite care is appropriate to meet your needs.  Remember, you have the right to appeal any decision made here.  Some charities also organise days out during the holidays to help give parents some crucial time for themselves and there are often similar schemes for siblings of disabled children.

 

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