My problem with services in the UK for autistic children

I could write forever and ever about the flaws in the services available to our children with additional needs, and I feel very strongly about the matter as many a professional has had me on the end of their phone, telling them the flaws of their service, probably while they call me all the swear words under the sun (actually I would bet my last pound that this is true). I am sure that in comparison to other families, I have been fighting the battle for services for quite a short time, but we all fight hard for what our children need and moreover, what they deserve. I speak from my experience of services I have fought for my little monkey who is non verbal and has Autistic Spectrum Disorder. I will draw on my own experiences and appreciate that my experiences do not reflect that of everyone, however from talking to a range of people over time I realise that many parents and carers feel that services are lacking, and very slow to receive from the point of referral.

In August 2015, the National Autistic Society (NAS) launched a campaign to put an end to the long NHS waiting times for diagnosing Autism. Waiting for a diagnosis is torture, it is difficult enough to get a referral for specialist support and I feel that all too often, parents are treated as though they are being paranoid about the need to see a paediatrician. We were fairly fortunate in this area if I am honest, but still the wait was months when in actual fact it should only have been weeks. In March 2015 I visited the health visitor’s drop in clinic to ask about Noah’s lack of speech, I was convinced it was a hearing issue as he suffers terribly with ear infections over the winter. Thankfully, our health visitor is fantastic and asked all the right questions and explored all areas of his development in great detail. I walked into that appointment concerned that Noah may have glue ear, or similar, and I left considering the real possibility that he may be on the Autistic Spectrum. She suggested we started with a hearing check.

By the end of April, his hearing had been assessed and we completed some additional development forms and endless questionnaires to support the referral to the paediatrician. Now, here is where we had our first minor hurdle, the GP was required to refer to the paediatrician, initially they refused on the basis that Noah was ‘too young’ to be assessed for a developmental disorder. After a rather cross phone call from me demanding they reconsider, they sent the referral to the paediatrician which was returned to the GP stating that there was paperwork missing from the referral, it was in fact on the doctor’s system but had not been correctly attached. Third attempt, the referral was sent and in June, I received an appointment, for September. This put the wait time at 6 months before we had even sat down with the paediatrician. 

This is half the difficulty, the fight for an appointment in the first place is too tough and takes a long time, only to get the appointment for a few months time. Paediatric services are stretched and certainly in our area, there is a long wait to actually see someone. The National Autistic Society have made good progress in addressing these issues, and have made commitments to continue to do so. The following is taken from their website:

Our campaigners gathered outside Parliament, which prompted over 500 people to respond to the Government consultation on NHS priorities urging Jeremy Hunt to make autism a priority.
Our campaigning pushed the Government and NHS to tackle some of the obstacles preventing timely autism diagnosis, in significant ways.
Thanks to you, for the first time ever the NHS will start to measure the number of people diagnosed with autism in every area of England.
This is a game-changing development for the future of influencing autism policy. The data can play a vital role in getting waiting times down. Because it shows how many autistic people there are in a given area, so that services can be planned and budgeted for.

National Autistic Society, 2016.

Huge steps are being made for change in England to tackle the long waiting times for diagnosis. While this is a fantastic achievement by NAS, the commitments by the Government and subsequently, the requirements on the NHS to measure the number of people diagnosed with autism, all take time. These are all issues that should have seen change a decade ago. It is not enough. The NHS is failing our children and it has done in this area of assessing and diagnosing children for a long, long time. I will return to our story of getting our diagnosis but first I must rewind to the beginning again to explore another area of huge delay..

May 2015 – A week after a perfect hearing screening, a speech and language therapist from the children’s centre came to carry out an initial assessment on Noah’s communication, which she did and advised us of some strategies to start to use at home to promote eye contact and provide opportunities that would encourage the need for communication. Wonderful, we thought, some real help is coming in and we can start to see some improvement and help our little man learn to talk, if he is able. The SLT advised us that she will be making a referral to a specialist team and that we should hear in 2 weeks but it could be as many as 13 weeks as the service is over-stretched with incredibly long waiting lists. 

August 2015 – We still had not received an appointment and had no contact details for the speech and language teams as we had no communications from them at all and even calling the health centre and hospital, we were unable to locate them. We called and left a message for the SLT that we had initially seen, which was not returned. We called our health visitor who said she would chase the SLT, and still no contact from the SLT. I convinced the GP to chase it up for me and to my surprise, the speech and language teams had never heard of my son, he was not known to them at all. By this time it was September and we were due to see the paediatrician, I stupidly assumed that my boy was on somebody’s waiting list and is just waiting his turn, I was wrong. 

The appointment – Our paediatrician I must say from the off, is an absolutely fantastic woman who clearly holds all the children he sees very close to her heart, she made us feel at ease and all the fears and worries we had about the appointment just melted in that minute. As part of the assessment for Autism is was necessary to obtain an assessment from, guess who? Yes, speech and language. The paediatrician re-referred us for SLT.

October 2015 – We receive a letter to make an appointment for speech and language, finally. When I called to make the appointment I mentioned that I was surprised how quick the paediatrician’s referral had been processed and said that we had been waiting since May for the initial referral to be responded to. The lady explained to me that she had not yet received the referral from the paediatrician and that this referral was from the children’s centre SLT and had been received 1 week previously. So the SLT never sent the referral in May when she said she would, I did call her and leave a message for her to call me back to discuss but she never did. It is terrible that we sat at home for months waiting for an appointment that was never coming. Even when we did get seen for Noah’s autism SL assessment, at the end of November, we were assured that he would be prioritised and would likely be seen after Christmas, taking into account the waiting times, and as I write this, it is the end of February and we still haven’t been seen. I haven’t even received a letter to call to make an appointment. And that is the reality of speech and language services in this country.

I can’t help but feel that if services were available as soon as they were required, we would have the advantage of early help for our children with additional needs. Noah was diagnosed formally in December, and I know that many, many other families are still fighting for their diagnosis after years of battling with the NHS and support services. I accept that our wait was short in comparison to others, but still too long. 

The one positive for our boy is that he has a specialist Autism teacher assigned to him, she comes both to our home and to his nursery and works with him to achieve his developmental milestones that he is behind on and encourages a positive learning environment. The service is fantastic, but funding only allows for her to come for 1 hour every 2 weeks. The support she offers is fantastic, but not enough, her team is over stretched and unable to offer more support to the children on their caseload.

The whole process of accessing support services for your child is a battle, a war that you will always fight, you will always be passionate about, and you will always put yourself on the back burner. It really is disgusting that in 2016, there are children with undiagnosed developmental disorders, children with little or no verbal communication and no support for these needs. Drawing on my own experience, I raised concerns about Noah’s speech in March 2015, we are a week off it being 1 full year since I took my little boy to see a professional worried that he could not speak. 

More needs to be done. Our children need to be diagnosed sooner, and have the opportunity to access the services they require.

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My Random Musings

1 thought on “My problem with services in the UK for autistic children”

  1. Goodness that does sound like an awfully long wait! I'm not sure if where you live makes a difference to how quickly you're seen, but either way you really ought to be seen quicker than 1 year!
    Thanks for sharing with #PoCoLo
    PS: sorry for the late reply.


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