Parental Guidance Required

I have four children, their current ages are 16, 14, 11 and 8.  In the eyes of the law however my eldest child is in a grey zone, hovering between adolescence and adulthood.  You see I have recently discovered that the years between 16 to 18 mean different things depending on what you are looking at.



When Theo turned 16 he proudly reeled off the list of all the things he could now do:-

Ride a moped, buy a lottery ticket, drink alcohol if it is with a meal, fly a glider...

That was the interesting stuff.

But what about the other stuff?   The stuff we really didn't think about until it started to impact his life.


Theo is now considered to be an adult by the National Health Service.  This means he is treated in adult services, he is expected to make his own decisions on his health care and he does not need to have his parents involved in these matters.

Which is fine if you are a very mature, sensible 16 year old who can make doctor's appointments, conduct discussions about your health, get yourself to hospital appointments and make decisions about treatment plans.

But what if you are a 16 year old boy with high functioning autism and an ever worsening problem with allergies that is seriously affecting your quality of life.  What if the fact that you have autism means that it's hard for you to differentiate whether you are feeling ill or depressed or angry or tired.  If you can't recognise the onset of symptoms because you are just not programmed to.?

This is the boy who I found getting dressed in his school uniform ready to go to school with a 40 degree temperature and suffering from swine flu.  This is the boy who frequently asks "did I eat today?" because he just does not have the hunger cues we have.

I had a call yesterday afternoon asking me to give a message to Mr Theo Nimmo, could he call our GP practice please.  Now when we go to the GP, Theo freezes, he can't make eye contact and always asks me to speak on his behalf.  If the GP asks him how he is feeling he will normally reply with "fine" or "eergh" . Which is not great when you are trying to get to the bottom of allergy triggers and why he has developed asthma, severe skin rashes and what appear to be food sensitivities.  All medical correspondance is now addressed to him and he is expected to manage his own appointments and discuss his own results.  But this is where it all unravels - Theo is still in compulsary full time education, in a school which does not allow the boys to have mobile phones, he cares more about about the latest AMA on Reddit than whether his allergies will respond better to an elimination diet or antihistamines.

So what do you do when one part of your child's life is still very much under your care.  If he is unwell in school he is not allowed to travel home on his own, I have to go and get him for example. And another part of his life is completely and utterly removed from your parental influence?

When I thought about the impact of transition, I was more concerned with Theo's move from full time education into higher education and how he would manage moving to a less structured academic framework.  I did not really consider health needs, I just assumed I would still be responsible for his health care until he was 18 and leaving school.  But apparently not .

There were no transition discussions, careful preparations, plans for what Theo wanted and what he needed.  No, like many other young people who are high functioning and physically able he moved form being a child to being an adult on the day of his birthday.  I know things will be different in Daisy's case because she cannot live independently or manage her own care, she will always be totally dependent on me.  But surely there should be a gradually easing in Theo's case from dependence to independence.  It's probably true of most teenagers but with a lifelong neurodevelopmental condition maybe the line is not so black and white as the NHS expects.

So what do you do in this case?  Well thank goodness once again for charities and the voluntary sector because a call to the National Autistic Society has helped us formulate a plan with Theo aimed at helping to  manage a smoother transition for his healthcare needs over the next couple of years.

We have sat down with Theo and discussed what he wants.  What he wants is to get his allergies sorted, what he doesn't want is to have to deal with the people who will help sort them, to organise the appointments, to have to speak to doctors - not yet, maybe in a few years but at the moment just getting his head around his A level studies and dealing with day to day life is enough for Theo.  So he has agreed that it would be a good idea if we draw up a lasting power of attorney for his health and social care.  This would enable him to give legal permission to us, his parents , to continue to advocate and act on his behalf on decisions relating to his health care until such time as he feels he would like to take this on, at this point the document can be revoked.

We think that a good time for this would be when Theo leaves school and hopefully goes onto university, this gives us two years to help him manage this transition.

As I write this I can hear people shouting "what about his rights to confidentiality?" - absolutely, if this were one of my other children I would want to respect their right to visit our doctor and discuss things without us knowing, they will not need a power of attorney for us to retain a right to know, but Theo has aspergers  He can present as a bright, capable young man, but asking him to have a conversation about his health or proactively seek out help from a stranger is completely alien to him, it's a skill for life he needs to learn and practise before being thrown into the deep end of NHS services.

We will always be there for all of our children, regardless of their ability but there's a fine line between being an interfering parent and an advocate.  Daisy will need us to be her advocate 100% of the time for as long as she is here, Theo's journey to full independence will take a little longer than his other siblings and our role is to provide that safety net for him until he is ready to run free.

Readers who are parents of children who have high functioning autism may want to be a little bit more prepared than we were for transition.  The National Autistic Society are fantastic at supporting parents and providing information on issues like this.  They also put me in touch with solicitors who are experienced in issues relating to caring for someone with autism.


Have a look at their website http://www.autism.org.uk/

Here's more info on Lasting Power of Attorney https://www.gov.uk/power-of-attorney/overview






14 comments:

Stephanie Nimmo said...

THANK YOU!!!

Stephanie Nimmo said...

I totally agree and there needs to be more awareness within the NHS regarding these issues with our ASD kids. Sick of red tape everywhere we turn! Great article

Stephanie Nimmo said...

What an insight. My NT 16yo has just gone thru the same and I haven't batted an eyelid, apart from a bit of an.. "oh...". Next up is my autie teen. Forewarned is forearmed thank you :)

Stephanie Nimmo said...

So can you not just go to the GP with your child once they're 16? And make appointments for them? Or do you have to have power of attorney?

Stephanie Nimmo said...

Thankyou for raising this. We are on the edge of transition and it is apparent that my 15 year old autistic son will not be able to advocate for himself when he reaches 16.

Stephanie Nimmo said...

I'm 22 and on the spectrum and I still can't handle dealing with legal, finance, medical, or insurance issues, so my parents have power of attorney & yet I still get questioned which totally throws off my whole day.


Last time I talked to the insurance company they wanted to take legal action against me for harrassment, luckily it all worked out but it just shows that all the "red tape" people talk about is accurate beyond belief. FYI, I live in the US.

Stephanie Nimmo said...

I don't have a child with autism (other problems, yes. But not autism) and I just wanted to say I think you are doing the right thing, and thank you for writing this post, because I wasn't aware of it, and though I have a long way to go until he is 16, I am happy to have read it and will be more prepared.

Downs Side Up said...

Very useful post for other parents to consider Steph. I will share. H x

Alex said...

Yes CAHMS will still see you until you are 18, I know this because I'm 17 and been seeing CHAMS since I was 16 - they said they would hand me over to the adult mental health services when I hit my 18 birthday in 3 mouths time and that is been planed in our meetings now. However the key difference is he will have more say in his medical treatment, and he will also be able to consent to medical treatment without prenatal consent.

Alex said...

That is the key differences he will have at 16.

Stephs Two Girls said...

Glad I've read this as it's something we can think about for the future too - and something where I bet there's other parents out there who don't know this option is available to them! x

stephnimmo said...

You can make appointments for them and attend the appointments but you have no say over their care, you cannot have access to their results or speak on their behalf unless you have some sort of document which grants you permission. Our GP will accept a letter from my son saying I can have access to his results on his behalf but in terms of dealing with specialists and other areas of healthcare (for example if he has to go to A&E) without his formal permission through the form of a legal power of attorney then I cannot act on his behalf

Alison said...

Thanks for this. my son is 16 next week, ADHD and just diagnosed with Aspergers as well. Like you I'm more concerned with issues regarding education and had no idea we might ahve problems in this area. As far as I know though he will be under CAMHS till he is 18 ... fingers crossed!

Candace said...

Thanks for writing this. My Son turned 12 last week so I have a few years yet but its good to know what I need to do practically to give him the support he will need.

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