Around 700,000 people in the UK have been diagnosed with autism.

And research suggests that more than 128,000 children in the UK with suspected autism run the risk of not being properly diagnosed while vital health services are restricted during the pandemic.

The figures released by Autism Parenting Magazine estimate there could be nearly 6,000 children in Greater Manchester undiagnosed at a time when diagnosis is more essential than ever.

Helen Boden, CEO of I AM, formerly the Autistic Society of Greater Manchester, says they have heard of delays approaching three years.

I AM operates a telephone and email service for parents seeking support with autism and Helen says one of the main issues has been long wait times.

“This issue around diagnosis and the routes to diagnosis has been an ongoing battle for many parents for many years,” she says.

“We're hearing the delays in diagnosis in Manchester can be anywhere between six months to almost three years in some cases.

“It can feel completely overwhelming when you’re desperately trying to seek support but are getting stuck in the situation.

“If you haven’t got a diagnosis then it can possibly shut the door for you in terms of accessing support.

“You need the diagnosis in order to access educational help and care plans within school and everything pivots on having a fast and efficient route to diagnosis.

“There has been and continues to be long delays in diagnosis of autism but I think the current situation is just further adding to those delays - everything has shut down to a bare minimum and is just operating at much smaller levels.”

Families are facing longer wait times for an autism diagnosis during the pandemic

Figures released last year by The National Autistic Society (NAS) found that patients with suspected autism were having to wait more than 19 weeks for their first appointment.

The research also found that 10 out of 25 English health trusts had an average wait time of 137 days, way above the set target of 91 days.

The Greater Manchester Health and Social Care Partnership (GMHSC) said it they thought it was 'unlikely' that delays in diagnosis could be as much as three years but said they would be happy to look into any such cases to expedite matters..

“Due to coronavirus some face-to-face assessments, observations and interviews within the autism service have unavoidably been restricted," a GMHSC spokesperson told the M.E.N.

"But services have continued to be provided where suitable alternatives to face-to-face assessments are appropriate."

The GMHSC said it was continuing to assess children with autism during the pandemic

Helen at I AM added she had heard from many families about times when a lack in understanding the characteristics or identifiers of autism had also led to delays and misdiagnosis.

“Quite often there’s a lack of awareness from GPs who are usually the first port of call for parents who are struggling,” Helen says.

“If someone is severely autistic, they tend to fail milestones and wIll get picked up much quicker but for children who are high-functioning, the signs can quite easily be missed.

“As a result, high-functioning children may remain within a mainstream setting and be having a really challenging time.

“There needs to be a greater level of awareness so people can spot the indicators quicker and they can get diagnosed quicker.”

Jane Thompson, from Bolton, is mother to Rob, who was diagnosed with Asperger’s two years ago at the age of 14.

Those with Asperger's tend to have less severe symptoms from autism, but will still have specific learning difficulties and may still have difficulties with understanding and processing language.

Rob's diagnosis came a year after Jane first requested a school assessment by an educational psychologist, which was followed by a referral for further assessment at Child and Adolescent Mental Health Services (CAMHS).

She decided to seek a diagnosis after she was made aware of the concerns some of Rob’s teachers at secondary school had.

There are concerns that children with suspected autism could be waiting extra long for diagnosis

“In year seven, we were asked to see his head of year who told us that, although Rob was in school, he was missing lessons,” Jane explains.

“He suggested we took him to see the GP but he would not say what he wanted us to ask the GP about. He would only allude to the fact that they had other children who were autistic who were having similar difficulties."

Jane says that they haven't personally had any problems with doctors but the main issues, in their experience, have been around a lack of understanding from teachers.

“At high school, Rob was supported through the special needs department and SENCO but there were still issues of how teachers were unable to make ‘adjustments’ to allow him to excel in class,” she explains.

“He finds anybody chatting in class hugely distracting but teachers did not deal with this and it sometimes led to him shouting at the class and being sanctioned.

“He finds it hard to get started, and when focused, it is hard for him to stop, so 40 minute lessons are hard to cope with. He found group work very challenging.

“When I asked him – he said that he didn’t think any of the other children knew about his Asperger’s. He did not feel confident to talk to them about it, and about what they could do to help him.

"This is certainly not something the staff ever did – but it would have helped enormously."

'We’ve heard of many children who are struggling to conform with the new rules'

Helen says that I AM have also seen an increase in autistic children feeling anxious about going to school due to the pandemic and how changing guidelines are causing further confusion and stress.

“Autistic children don’t always cope well with change and it can be really overwhelming when these changes are coming at you thick and fast,” she says.

“We’ve heard of many children who are struggling to conform with the new rules of being in a bubble and not mixing with other students outside of that.

“It can be really difficult to operate within these parameters and you can just see how things can spiral out of control so quickly.”

Further research by NAS has identified that seven in ten parents say their children have had difficulty understanding or completing school work during the pandemic.

Rob, 16, is now at Sixth Form college and the changes to his educational environment, along with the new guidelines, have meant that he has found it extra difficult to fit in.

“He has a mixture of lessons online and in college,” mum Jane says.

Rob, a sixth form student, has found the changing rules during the pandemic tough to follow

“He is OK on the days when he is able to go into college but it is quite a hard pattern to get your head around and he has found this difficult.”

Jane says the school expects students to be ‘increasingly self-sufficient’ but, because of his Asperger’s, Rob needs support until this can become familiar and natural to him.

“He has two support workers at college but we were not told about them, who they are, what they do, and how to contact them,” she adds.

“We contacted college with concerns about how he was doing and had a very aggressive letter back saying they had put all kinds of support in place, Rob was not accessing it, and perhaps he should think again about whether he can remain at college.

“The boy who hung around outside the special needs room at high school for weeks waiting to be invited in became a great source of support for the younger children in the special needs department.

“But he will always need support to access new things, and also to be organised and to have everything he needs, in the right time and in the right place.

“Even if schools can spot someone who might be on the spectrum, it doesn’t mean that they are able to support them.

The autism awareness puzzle ribbon, which was created in 1999

“Rob is a very chatty and engaging character, but this can mask any problems he is having.”

Earlier this month, the Department for Education (DfE) released a consolidated report on expenditure and performance.

Despite allocating an extra £780 million of spending in 2020-21, the system for special educational needs and disabilities (SEND) was deemed to be ‘fragile’ and a review had been launched ‘to consider more fundamental changes’.

Helen said the report raised concerns about how SEND funding could be impacted in the future, and expected that this would only increase the time it takes for families to seek diagnosis and support.

“You can see this log jam happening as we’re stuck in this COVID situation,” Helen adds.

“When we come out of this pandemic, there’s going to be an even greater delay.

“We’re in this perfect storm at the moment with a rapidly changing and broader environment but with little access to support to help with that environment.”

Addressing the concerns, the Department for Education said they were focused on supporting SEND children.

“We’ve announced the biggest increase in school funding in a decade," a DfE spokesperson told the M.E.N.

"We are increasing high needs funding for local authorities by £780 million this year and a further £730 million next year, boosting the total budget by nearly a quarter to more than £8 billion in 2021-22.

“We’re making sure teachers get the training they need to support children with any type of Special Educational Needs and Disabilities (SEND) and delivering thousands more school places for these children.

“Throughout the pandemic we’ve prioritised pupils with Education, Health and Care Plans, keeping schools open to them where it was safe to do so, and our £1 billion Covid catch-up fund includes additional weighting for specialist settings in recognition of the higher costs they face.

"Our SEND review will further improve how young people with additional needs are supported.”

The Greater Manchester Health and Social Care Partnership (GMHSC) added it was working hard to to make Greater Manchester the country's first 'Autism-friendly' city.

“Over the next 3 years, autism diagnosis will be included alongside work taking place on children and young people’s mental health services - to test and implement ways to reduce waiting times for specialist services," a GMHSC spokesperson said.

"Investment is also set to take place in Greater Manchester that will see an increase in the capacity of autism assessments.”

Autism Parenting Magazine has created a guide to help parents spot the early signs of autism, which you can find here.

For more support on autism, visit the I AM Autism website here.