Autism: Whose fault is it anyway? Blame does not help the parents. 10 tips for parents going through the SEND diagnosis process.

A guest post written for us by one of our parents.

Ten years ago as we entered the Sure Start Centre where our first parenting course took place, I remember the feeling of “Why are we here?” as though it was yesterday. Whilst the well-meaning health visitors watched us playing with our first child, the overwhelming feelings of being patronised, judged and let down as first-time parents started us on our long journey towards an autism diagnosis.

Far too often I hear of parents being blamed by professionals in the system and each time it brings back memories of endless conversations in blank NHS meeting rooms with those awful vertical blinds and blue chairs. My child froze in those rooms as much as we felt like doing. 

There are many amazing professionals out there who take the time to understand and support children and young people and to you, we say thank you! But there are sadly times when families are blamed and if that is you then this article is for you to feel encouraged and understood.

If I could go back ten years, these are the things I would tell myself. I doubt I would have listened though as I was so worn down and life was so very, very difficult. I’m sure friends told me these things but I wasn’t in a place to take it in. Zero sleep. Zero support. Zero breaks. That makes for one very tired and broken mama.

Yes, there are bad parents out there, but the chances are if you are reading this then you aren’t one of them – because you care about your child enough to find out how to support them best.

These are my top tips for coping when you feel like you are being blamed as a parent. Pick the ones that feel right for your family. It’s your family and you get to choose what works for you.

1.     Be patient

When you are tired and broken, all you want is some help, some support and someone to believe you. You put all of your hope and trust in those who you think will give you those things: the professionals. Sadly even if you do get the right diagnosis, it doesn’t always lead to help or support. You just enter the next level of the SEND Elevator –

Level 2: asking for SEN support in school so your child can be allowed to wear joggers in school instead of the trousers which feel like sandpaper to them…

Level 3: debating an EHCP draft with the LA who are 20 weeks over their legal timetable…

Level 4: asking for two hours social care support so your child can go to scouts… and being awarded 1 hour.

Up up up and away…

It’s not at all easy to be patient when life is so hard. I know that. I lived that. Take a step back and make a plan and stick to it.

2.     Gather evidence

Buy a big folder and start keeping a copy of everything. Everything. Or for the ultra-organised out there create an electronic system with everything in it. Get everything in writing. If school email you about your child – in the folder it goes. If they call you over for a little chat about any difficulty – email them so you have a record of the conversation and put that in your file. “Hey lovely teacher, it was really great to catch up today and chat about little Harri and the biting incident…” 

3.     Engage with their courses (It’s a tick box)

Parenting courses are on their checklist of “ways to check you aren’t a bad parent”. They can be soul-destroying, patronising, and tedious and no you shouldn’t have to but it’s the way the system works and they are not going to change it for you. Before you get a diagnosis it’s highly likely that the courses they send you on won’t be applicable to the needs of your child and they are often run by teenagers who haven’t had a whiff of parenthood. Smile, engage, and get the certificate, frame it! There are actually some good parenting courses that you may want to book yourself. Like Care for the family.

4.     Don’t give them any excuses 

“You are live in a paediatricians office…please do not swear” it might seem obvious to some but it’s always helpful to put your best foot forward. Sometimes they do make quick judgements about us as parents. It’s not fair but it’s just the way it is. Be yourself, I’m not encouraging you to pretend to be someone else but take the time to think about how you present yourself and your family before you go to your meetings.

5.     Focus on your child’s needs

It took me a long, long time to realise that the people assessing my child really didn’t have time to focus on how stressed, broken or tired I was. It took me a long, long time to realise they only had time to assess my child. I found my emotional and practical support elsewhere at places like Incredible Kids and from other parents who understood.

6.     Don’t just focus on your child’s needs

You’ll find it in every self-help book you could ever read – don’t forget to look after yourself and the rest of the family. Even if it’s just a takeaway coffee by yourself once a week, find a way to make it happen.  It’s easy for other relationships in your life to end up bottom of the list – it would be great if those people you care about now were still in your life when your child is a young adult and thinking of living independently.

7.     Consider saving for a private assessment 

Sometimes there are children who are so good at masking their issues that the people assessing them can’t fathom what’s going on. Their tick box says: “school say there are no issues”, “mum says challenging at home” Computer says no. With waiting lists for assessments sometimes lasting years and half-hour appointments every six months once you do get one, your child could be leaving secondary school before the paediatrician makes any decision. I’m thinking worst-case scenario, of course!! Whilst some Education Psychologists charge a lot of money you can get a full Ed Psych assessment for around £500 or an Occupational Therapy assessment for a little more. That evidence can be vital to getting over the hurdles that stop you from making progress. I know not everyone can afford it and not everyone thinks you should have to go down this route. If it’s something you feel is right, save up a little at a time, it’s cheaper than most UK weekends away. 

8.     Learn as much as you can 

Learn strategies to support your child’s needs and behaviour. This helps with number 3 above and obviously helps your child to some extent, although if your child has additional needs, you can learn every strategy under the sun and be the most perfect parent in the world and you will all still have some challenges to face on a daily basis. This is true for ALL parents. Once you’ve done that it’s time to move on to the serious stuff: the SEND Code of Practice. Whilst there may be times like 2020 Lockdown where the Government change the rules, in general, this needs to be your new bedtime reading. IPSEA and Supportive Parents (or your local SENDIAS service) produce some great leaflets and guides to simplify the legal stuff into more digestible bite-size information. If you understand your child’s rights and the responsibilities of the professionals around you then you’ll be in a much stronger position to access the help your child needs. 

9.     Create your own support

As if being misunderstood by professionals as a parent wasn’t hard enough to deal with, something often happens to friends and family whereby they make it their sole mission to convince you that you are wrong about your child. If this doesn’t happen to you, I’m glad, because it hurts ten times more than the professionals not believing you. Professionals get to see you for half an hour, twice a year through the lens of an overstretched, underfunded service, you can on some level understand why they take a long time to diagnose children. Family and friends know you inside out and should be your biggest supporters but sadly life doesn’t always go that way.

Here at Incredible Kids we make it our mission to help you create your own support network of people who understand what it’s like to be blamed, misunderstood and broken. You will need them.

10. Trust your instincts

After our first set of assessments for autism, we were told by a paediatrician, using their best gentle and understanding voice that our child did not have autism. “We don’t know what your child does have, but we know they don’t have autism”. A year later the same department had diagnosed our child with autism. We were told by the school that our child did not need any SEN support. “We just don’t see it,” said the headteacher at the time who was writing emails suggesting I was fabricating the difficulties. Within a few months of changing schools, our child had full time 1:1 and an EHCP.

NEVER GIVE UP!

The views, thoughts, and opinions expressed in the text belong solely to the author, and not necessarily to Incredible Kids

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