Tuesday, 28 July 2020

Will the pandemic slow down autism assessments?

Children by clock face

I had to make an appointment with a doctor last week. Anthony's meds means he has to speak to his GP every now and again before his prescription can be renewed.  I'd seen things in the news about the knock-n effects of the COVID-19 pandemic being a delay in people seeking medical attention.  I didn't think it would be so difficult to speak to our GP though.  It took over a week of phoning every day as the surgery opened to try and get one of the daily slots.  Eventually, I got one because we has actually run out of medication.  And I wondered how challenging this might be if it wasn't just our GP we needed to see.

Imagine your child reaches three years and still doesn't say a word. They don't point to anything, comment or smile. They sit and repeat patterns of play over and over again and get upset if they are disturbed.   You seen a few programmes on TV or perhaps have read or seen something somewhere and think that your child might be struggling because they might be autistic. So, you try and make an appointment with your GP.... and that's just for a referral.

The wait for an autism diagnosis in the UK was already long. According to an article in the Guardian some people with suspected autism were waiting more than two years to be assessed and almost four years to receive their diagnosis.  So, if you had suspicions when your child was three years old, then you could already have had to wait until they were seven to get an autism  diagnosis. 

The NHS guidelines say any child or adult in England who are thought to be autistic should be assessed within three months.    Imagine what happens in your life in four years... especially if you are just three years old to start with.   These are the primary developmental years.  Imagine the impact having a diagnosis could have to help.

So what to do?  What can be done?

We have to make sure awareness of autism and other conditions is better.  This can help parents like me spot the signs of autism and seek support and referral earlier.  So if you are one of 'our lot' then help spread the message.

We should obviously make assessment easier and faster.  The autism pathway is our local borough is dependent on many professionals assessing a child, usually in person, then reviewing each other's reports and coming to a decision. Some of these assessments are based on observations and on the parents observations. It takes time and people and at the moment that is even more difficult.

I have read about recent development in technologies that have been brought about by the COVID-19 pandemic that could actually help.  While some of the artificial intelligence companies like IVS could be doing things during the pandemic to manufacture medicine, potential vaccines, ventilators, and other vital equipment and testing, I have also read that this kind of AI technology could help in getting fasters results for other diagnoses such as autism.

And what if you are this parent right now?  Left in limbo and wondering if your child needs support? Here are some things I can point to:

Your child may hopefully be returning to school in September. You don't need a diagnosis to get help for your child at school.  See your school SENCO as a first point of call.  You do not need a diagnosis for an Education, Health and Care Plan (EHCP) either - these are based in needs.  I've got more information on them here.

Secondly, there are many organisations you can talk to if you don't have a diagnosis but have had an assessment or are suspected of being autistic.  The National Autistic Society and their local branches will talk to you and support you in this.  I know it an be a worrying time and organisations like Skylarks and other parents are invaluable.

And finally, diagnosis or not, your child is still the same gorgeous child they were before suspicions and while getting assessed.   Support them in whatever way you can, don't worry about getting things wrong (it's going to happen) and love them as you always have.


4 comments:

  1. I dread to think how long it would take to get a diagnosis now. This is great advice and I love the last paragraph of your post x

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  2. I am amazed the guidance is three months, it should be but I don't know many people who have been seen that quickly. Sadly I think we have a real postcode lottery when it comes to autism diagnosis. There will undoubtedly be a number of younger children who may not be recognised as needing help until later given less access to children's centres and play groups etc. #SpectrumSunday

    ReplyDelete
  3. Balancing parenting and working is far from the easiest job in the world. In fact, it might be just the opposite. The upside is that the COVID-19 crisis has taught us new ways to do both. If you're hoping to lighten the load, taking these tips on board will certainly help you do that. Read more: parenting and working during COVID-19, revisited.

    ReplyDelete

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