Just Charlie G

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mamhead-07-chloe-20160424-850So at the end of May, Chloe was diagnosed with Autism Spectrum Disorder. While it was no surprise to many who know her, it was still something of a shock to the system to have it there in black and white. The assessment reports were upsetting and really hammered things home.

We always strongly suspected Chloe had Autism, problems at home meant we really needed some assistance and diagnosis seemed logical. With a confirmed diagnosis we hoped we would be able to access services and interventions that were not available to us with out the label.

Oh how wrong we were. In Exeter, the Autism team is diagnosis only. They do make some recommendations on their reports, but they don’t actually offer any support and so we found ourselves saying thank you and walking off out into the rest of our lives with our daughter having this diagnosed condition and no support.

Can you imagine rocking up to A&E screaming in pain, them doing an x-ray and finding you have a broken leg and sending you off into the world to find a way to fix it yourself? No of course not, so why was this the case with our daughters autism? What’s worse is that we’re not alone, its a story you’ll hear repeated up and down the country with all sorts of neurological conditions.

Our kids are being failed. It’s been proven that the earlier a child is diagnosed and they can get interventions, the better, as the brain develops there is much more ability to change, learning new behaviours is easier.

You know me, not one to take things lying down I’ve spent months trying to find out what we can do. Camhs tried to close our case, “autism isn’t a mental health issue”. It’s been a dark time with lots of tears and stress from me…”how can they do this?!”, “where do I turn?” and while we still don’t know our way in some areas, I’ve managed to access help and support in others, through research and sheer determination borne of my absolute fury.

Lola starts attending Devon Young Carers this week, so she can have something of her own and meet other youngsters in similar situations. I hope it will be valuable for her.

Chloe’s sensory and dental issue continue to be a problem. The specialist dental service have now done a referral to the Occupational Therapy team in Exeter after seeing my desperation. I think the wait, as always, is lengthy, but I’m hoping some of those sensory issues will be looked at.  If the dental service hadn’t done this, I would have done the referral myself.

We have had a “Resource Allocation Assessment” and budget has been approved for Chloe to have an enabler for a few hours a fortnight as well attend groups and activities for kids like her, run by trained professionals. Again, if this isn’t done for you by a professional involved in your child’s life, do it yourself.

In addition the Communications and Interactions Team are going into Chloe’s school to observe and make recommendations. I hope this will help the school really get a handle on Chloe and provide advice for helping her through her school life.

Speech and Languages went into school to assess Chloe and while there’s no further need for their involvement they’ve been incredibly supportive, going above and beyond and giving the school advice and helping get the message home, just because she seems okay at school, doesn’t mean she is okay at school. Again, I did this referral myself.

As for Camhs, well they grudgingly agreed to do three sessions of exposure work with Chloe. They didn’t do that, they have done three family therapy sessions instead, the first with just Graham and I, the second with Lola, Graham and I and the final one will be one hour with Chloe. So they have offered one hour of support to Chloe. They have made it clear they don’t want to help any further. As other things have fallen into place however, it feels like Camhs are less important. I would argue though, that Chloe’s mental health is affected by her Autism and they have a duty of care to help…but its the only battle I cant be bothered to fight.

Finally feels like we’re getting somewhere, I say this tentatively though because we’ve learned the hard way not to be optimistic.

My advice to any parent in a similar situation is this:

Don’t accept what you are told. Don’t settle. Don’t stop fighting. When it feels like you can’t fight any more, keep going. Don’t let people pass the buck. Make people accountable, demand that if they won’t help, they will help you find someone that will. Demand a Team Around the Child Meeting (TAC) and get everyone there, hold them all accountable.

And while all this is going on, and you’re trying to negotiate the system while living with a child who has additional needs, try your hardest to make time for yourself, you need all your strength. Take up a hobby, see friends, read books for fun whatever it is you need to wind down, do it. And find support groups, online or otherwise, find people who know what it’s like, who have either been there, or are going through it themselves, you’ll find other parents a wealth of knowledge about what’s out there and your rights. If you are local to me, Exeter, drop me a line, I can point you in the direction of groups I use or know of.

Just keep fighting.

2 responses to “Life after Autism Spectrum Disorder Diagnosis”

  1. Oh gosh, this is awful. I can’t believe there isn’t any follow up after diagnosis, that’s terrible.
    Wishing you all the best for the future

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