For most jelibeans asking for help is difficult at the best of times.
As parents we are confused by so many things. Friends and family tell us that our child's behaviour is 'just normal for their age', but do ALL children just eat one food, refuse to wear clothes and have meltdowns 5 times a day? Do all 'normally developing' children struggle to hold a pen, knife and have ritualistic repetitive ways that impede their lives? For parents it is 'not being sure', 'not knowing' that is the hardest part. None of want to admit that our child is 'difficult', 'challenging' or 'disruptive'.
By the time we have summonsed up the courage to contact someone to ask, we are already doubting ourselves. So when we are met by a professional who looks disapprovingly giving us the impression that its OUR fault, it can get a bit disheartening. Who are we? Just over anxious parents who should know better? That's how many may feel when they leave your offices.
We have discussed the two most commonly used diagnostic routes in the section entitled ROAD MAP - it could be parents 'flagging up' issues or it could be a teacher contacting home. Whichever way it is what we are saying is:
THERE IS A PROBLEM WE WOULD LIKE HELP WITH PLEASE!
So what help can you give us? Belief for a start would be good. Many professionals don't realise that as parents we sometimes feel that you don't believe us. Sometimes actually we feel like you blame us. After all if we were good parents we wouldn't be sitting in front of you now?
EMPATHY - how is your bedside manner? Most jelibeans feel quite overwhelmed when in the company of professionals. Many feel like they are sitting their driving test again and under scrutiny. It is very reassuring to meet a professional who has a good understanding of the autism spectrum. For many professionals it is very daunting as the parents appear to know more! But then parents have to live with it 24/7.
According to recent research autism is largely due to genetics. For this reason there may be other children in the family who are also on the autism spectrum. For many families the child presenting with the most challenging behaviour is the one that gets to you first..........so when a parent complains to you that dear little Billy at home needs an assessment too, please don't look surprised or raise your eyebrows! The other phrase we commonly hear is 'learned behaviour'. Children will of course LEARN BEHAVIOUR, but it is not always the reason.
Many doctors are a bit baffled when it comes to assessing a child for autism. There are not many professionals who have a specialised training in autism, that is half the problem. Hopefully there will be many more soon!
RULES FOR PROFESSIONALS
We have come to you for your expert help, we haven't come to feel as though we are a 'bother'. Please treat us kindly.
Many of us have difficulty processing information, please speak slowly and don't use big words.
Most of us feel uncomfortable talking about out children in front of them. Please remember that.
All of us are genuinely wanting some support and advice. Please don't ask us WHAT WE NEED - WE DON'T KNOW!
Please don't talk about us behind our backs, we hate that. Please copy us in to EVERYTHING.
Please don't make us see someone else if you don't think they can help. We already are overwhelmed,
We may get upset or frustrated during our appointment with you, it may exhibit as aggression but often its just frustration or anxiety. We just don't know how to express ourselves.
Please don't keep us waiting for too long, it unsettles us.
Meetings, we don't do those well, please don't arrange a meeting to see us with the sole purpose of arranging YET ANOTHER MEETING, where seemingly nothing is being achieved.
Receptionist and appointment makers are often perceived to us as 'pit bull terriers'. We are just trying to get help for our children, if it takes one phone call or 20 we will pursue it to the dogged end.
WE ARE NOT ASKING FOR HELP WITHOUT REASON. Please believe us. Thanks.