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The Challenges and Realities of Autism: An Interview with Anna Kennedy

Posted by Templeton on Thursday, 15 December 2022

Autism is a word everyone recognises and understands - one would think, considering its prevalence. After all, more than one in 100 people are on the autism spectrum in the UK. For many, however, autism is still that little kid in the corner, banging their head on the wall.

Because of this misconception, families and carers of children and adults within the spectrum are in an ongoing battle with authorities for better educational and care facilities; autistic children often get bullied at school; adults with a diagnosis of an autism spectrum condition give up trying to get a job because of a lack of response and understanding from employers, and the importance of early diagnosis and intervention is often overlooked.

Challenges and Realities of Autism - An Interview with Anna Kennedy

Dr Anna Kennedy OBE, the founder of the UK Autism charity Anna Kennedy Online, has seen and experienced all this. Both through her two sons, who are on the spectrum, and through countless encounters with young people who have so much to offer to a society that often neglects them. Anna and her charity are dedicated to promoting the inclusion and equality of children and adults with an autism spectrum condition throughout society.

In our interview, Anna shares her journey, the barriers autistic people face in life and work, as well as the positive impact of autistic individuals in the workplace and in society.

 

How It All Started: Forging the Path to Autism Awareness

Anna's journey started when she and her husband, Sean, discovered that their two boys, Patrick and Angelo (today 32 and 29 years old, respectively), were diagnosed with autistic spectrum disorders. When the couple couldn't find a suitable education for their eight-year-old, affected by Asperger’s Syndrome and five-year-old with autism, they knew they had to do something about it.

"Patrick was diagnosed with Asperger's syndrome when he was four, but the consultant paediatrician didn't tell us until he was seven. I found out by accident. I had two very difficult pregnancies. Patrick was born 11 weeks premature, so he had a lot of difficulties. When he was born, he had septicaemia, and he had to have a blood transfusion. He just seemed to go through a lot of things until he was three years old when his health started to improve," says Anna.

"Growing up, I could see he was very clingy to me and found it difficult to play with other children – he was playing alongside them rather than with them. He got bullied at school as well. It got to the point where he would try to stop me from driving him to school. He'd say, 'oh, mommy, I really don't like it there. I feel like a big mouse is swallowing me up when I walk in the door.' It was just too overwhelming for him.

"At the time, I thought it was because of all the difficulties that he's had. Obviously, I didn't know then he was diagnosed as autistic, but, at that point, he already had a support assistant, and we were also seeing a therapist."

 

The Shock, the Guilt, and the Acceptance

"Because Patrick was really struggling at school, my husband and I had a meeting with the teachers," remembers Anna. "The therapist had sent a report to the school, basically saying that Patrick was diagnosed with Asperger's syndrome at age four. My youngest son, Angelo, had already been diagnosed with autism at that point, six months before age three. When they handed out the report, I'll never forget all this blood rush into my head, thinking I didn't know anything about it. I was in a big shock, and I also had the head teacher saying, why didn't you tell us, Mrs Kennedy? Because I'd just found out in front of everybody else.

"Obviously, I couldn't concentrate on the meeting. I remember just feeling hot, thinking, 'did I do something wrong? I don't drink; I don't smoke. Why is this happening?' You blame yourself, but there's no one to blame. It was a bit of a shock because I didn't expect it, especially in front of everybody else. That meeting concluded with them saying they couldn't meet my son's needs, and my youngest son's needs as well, Angelo's, because he was quite profoundly diagnosed with autism. He had very minimal speech and quite significant sensory difficulties.

"So I ended up with two boys at home, not having a school they could attend. They were just given five hours of home tuition per week by the local authority, who said that at that time, in the late 90s, there were no other children where I lived with autism," says Anna, who had just experienced the first of the many disappointments she would face from the authorities along the way.

Forging the Path to Autism Awareness

Finding and Providing Support

Anna and Sean, who never believed that to be true, started a support group in their home, which soon was joined by 275 families. They also fundraised and re-mortgaged their house in order to raise funds to open a school with special educational needs for their children.

"I knew that there must be other children where I lived that have autism. One day, I saw a parent at a shopping centre having a hard time with her child, and I recognised her son's behaviour. So I went up to her and said, can I do anything to help you? She then told me that her son had also been diagnosed. That day, we decided to put an article in the local newspaper, asking if any other parents had children with autism. 275 families responded. After that, we set up a support group in a church hall. Many other parents were struggling like us, where their children were not at school and just not given the appropriate support.

"Not long after, I found out about a school, very near to where I lived, that they were going to knock down to build flats. It used to be a school for children with physical disabilities, but because the doors were not wide enough for the wheelchairs, it had been empty for two years. My initial response to that was, why don't they just make the doors wider? But what do I know? But then I thought, why won't we make it a school for children with autism? So I approached the local authority, and then the real battle started," says Anna, who was determined to fight for her boys’ right to education.

 

The Birth of Hillingdon Manor School for Autistic Children

Anna and her husband decided to convert a local school – which was apparently due to be demolished – into a school for special needs children. Hillingdon Manor School for autistic children finally opened its doors in 1999, with only 19 pupils. Today, the school is one of the largest of its kind in Europe, celebrating 22 years of building a brighter future, with safe and structured education, for more than 500 pupils.

"It wasn't easy. We had to put a feasibility study together and prove that we could get the money to put a new roof over that building and everything that was needed. But in the end, they leased us the building for 30 years. We all came together to help. Parents, grandparents, aunties, uncles, friends and families came in to fix the boiler, get the furniture, painting, repairing. The British Airways, the British Airport Authority, and McDonald's also came to help us. We've even got the Navy on board! I was just asking anyone who could help us get this project off the ground. We completed what was supposed to be a three-year project in nine months, and the school has been going for 25 years now," states Anna with pride.

Anna has since set up another specialist school, a college, a residential home for adults, and a charity website with an online presence of over 50,000 international followers. She has won many awards for her campaigning work for autistic children and, in 2012, she was also appointed an OBE (Royal Reward for Inspirational Mother) Award by Queen Elizabeth II at Buckingham Palace for her services.

"I set up a college as well because my boys were growing up, and I was thinking, where my youngest son, Angelo, is going to go. I could see Patrick eventually going to work and living on his own, but Angelo was quite profoundly autistic, so he's always going to need one-to-one support. So we found another building that used to be a hospital for people with back injuries. So we asked the authorities again if we could lease the building, and we turned it into a college and a residential home. And again, everyone that helped us with the school came to help us with the college. My youngest son, Angelo, actually goes to that college now."

 

Anna Kennedy Online: "A Small Charity with a Big Heart"

Anna Kennedy Online is a small charity with a big heart, with a mission to promote disability equality through training, legal advice, social media outreach, roadshows and talks online and across the UK. Through advocacy efforts with and on behalf of people with disabilities, the charity raises awareness of the challenges people with disabilities face.

Anna and her team of volunteers are passionate about helping the society, raising Autism Awareness, and promoting acceptance across the globe by making a difference through their dedication to reaching out and supporting communities.

Anna Kennedy Online

"The charity is made up of volunteers. I'm a volunteer myself, and we work really hard. We're very passionate, driven and enthusiastic about what we do. We're all either parents, carers, grandparents, aunties, uncles or autistic individuals ourselves. And we've got so many fantastic role models. If you check on the charity website, you can see how far they have come. I've got an amazing ambassador, for example, a young man that grew up in the care system. He was homeless, and now he's an entrepreneur, has his own business, and just got married.

"We have so many great stories like that since the charity was born. They help the people on the spectrum realise what they are capable of achieving, and they also help the parents see a light at the end of the tunnel if they're struggling at the moment. It's all very exciting. And my husband, Sean, he's on the spectrum as well – he's got Asperger’s syndrome. He's a barrister and provides a lot of legal advice for the charity. He also does training and workshops.

"We're only a small charity, but we work very hard to raise as much awareness and acceptance as possible. We're currently working with the Metropolitan Police to launch a document at the beginning of next year called Stop and Search. It's taken us a while, but we finally got there. You've got to persevere, just keep going and keep driving forward, or you'll never get anywhere," says Anna.

 

Autism's Got Talent

Anna is a prominent advocate in the autistic community, promoting awareness and showing the positive side of autism.

"Autism's Got Talent started from our anti-bullying campaign called Give us a Break!, aimed to prevent bullying of children with autism in schools. From that campaign, many children, adults, and their families were sending me videos of themselves creating fantastic artwork, singing, or dancing. They were either magicians, musicians, or poets – all sorts of things. And they were sending me these videos because they were being bullied, and they were looking for an outlet to help them. When I saw these videos, I thought, wow, this is amazing. We need to do something with this. That's how Autism's Got Talent was born, and it's been going on since 2012.

"That's where I met Kieron, another of our many ambassadors," remembers Anna. "He entered the show in 2015 without realising what an amazing singer he was. Now he's writing his own songs, and soon he's releasing his first single."

Autism's Got Talent

 

The Importance of Early Diagnosis and Early Intervention

"The charity was born in 2009 because people were writing to me about finding it difficult to get a diagnosis. They would have to wait for such a long time," says Anna, who still feels frustrated and disappointed with the lack of facilities and support across the UK.

In a recent study, 2,000 families were interviewed about their experience with an autism diagnosis. The conclusion was an alarming average of 5 years to get a proper diagnosis for a child with autism.

"Even today, people are still finding it difficult to get a diagnosis. Some of them wait up to five years when it's supposed to be between six months and a year. And this has a detrimental effect on family life because children are really struggling at school. Some of the children are just about coping at school, and when they get home, they obviously have to release their stress somewhere.

"I've spoken to so many parents and adults that were diagnosed quite late. Most of them were trying all this time to mask the fact they were autistic, trying to get on in school or in their workplace. It's getting better recognised as in awareness, but what the autistic community wants is acceptance. They just want the same things as everyone else: they want to be accepted for who they are, to have a good education, a good transition from school to college and university, the support that they need in the workplace, and to have their own place to live. And why shouldn't they? They just might need a little bit of extra support," believes Anna.

Research shows that early diagnosis of and interventions for autism are more likely to have major long-term positive effects on symptoms and later skills. Early diagnosis of autism spectrum disorder (ASD) is possible in children as young as two years old. With early intervention, some children with autism make so much progress that they become fully skilled at coping with difficulties when they’re older.

"For me, the key is early intervention," supports Anna. "The earlier you start working with children, the better the outcomes. I've seen that at our school, where children come to us at the age of four. I'll give you an example of this student. He was having behavioural problems, and he wouldn't speak to anyone. But once he started trusting us, he just blossomed. He's grown up to be a wonderful young man, and he has achieved so much. He's fantastic at carpentry, he's great at teaching, and he's part of a street dance crew now. And all of that because we worked early with him."

 

"That's Why It's Called a Spectrum Condition"

"This young man's example shows what our children can achieve if the right support is in place, you believe in them, and find the key to help them. Like my own son, Patrick," says Anna. "He had a difficult start in life, but now he's got his own place, and he's been working for four years. But it's not the same for everyone – that's why it's called a spectrum condition. Each of them might need a different kind of support, and reasonable adjustments need to be made, whether in their workplace or at school. Sometimes it's something really small.

"I remember when my son was at college, he was finding it difficult to concentrate and it was because they'd sat him at the back of the classroom. So I suggested sitting him at the front and, when he gets overwhelmed, going out of the classroom for 10 minutes, so he is in the right head space for learning. And that's what they did in the first year, and he got a distinction. It was just that small thing that didn't cost them anything. It's the same at his workplace now. He sits in a quieter area of the office, and they allow him to walk around for a few minutes when he's feeling overwhelmed. It's not rocket science. It's just about listening to the person and finding out what they need. Something really small can make a huge difference to their life."

Autism is a spectrum condition

44% of individuals with autism have intellectual abilities that are average or above average. Like neurotypical people, those on the spectrum can have various interests, unique abilities, and skills. All one needs to do is recognise their differences and embrace them. As Anna also points out in her book, "autistic individuals are 'Not Stupid' just different, and often with enormous skills, intelligence and the ability to master many complex tasks and projects."

"I can't stress enough how important training is in the workplace and schools. And a piece of paper with a little bit of information about autism won't do the work. I'm talking about really understanding how different they are from each other. Also, training about sensory difficulties. A lot of our children and adults don't just have autism. They might also have dyslexia, dyscalculia, and various other overlapping conditions," adds Anna.

 

The Biggest Challenges of Autism

"Getting the right provision in place for the children but also for their families is a big challenge. Again, it starts off with diagnosis, and early intervention is crucial. If the child doesn't get the diagnosis, how can the school put the right provision in place? They can only do so much when they're not quite sure what exactly it is that they're dealing with. They might need speech and language therapy, occupational therapy, or even support from an educational psychologist. Additionally, with everything that's going on with the cost of living crisis, schools don't have enough money to support these needs. And the children that are going to suffer first are those who have got a disability."

Another big challenge is understanding how the system works, supports Anna. "The system can be quite complicated and daunting. With the HCP (education and healthcare plan) form, for example, if you don't understand what should be in that document, you're not going to get the right support for your child. You need to specify and quantify exactly what your kid needs. Or if you're looking for a college for your adult, it can take a long time to find the right placement.

"I recently did a documentary with Katie Price about her son, Harvey. He's on the spectrum, but he's also got significant health issues. So Katie needed to find a college to deal with his education and health issues. What she didn't realise was that you need to start looking really, really early and plan ahead because you might not get the funding for the college you want. These sorts of things are the loopholes parents need to know about," explains Anna.

A Piece of Advice

"If you need to fill out an important document, or if you have a meeting with your local authorities, take somebody with you who knows the system and can help you write down everything that you want to get across. Because sometimes it is quite complicated, and you might also forget things. Find an organisation or a local charity near where you live and ask for help. Usually, the smaller charities can provide better support – they are the backbone of this society, and the ones struggling at the moment because of funding."

 

Addressing Barriers to Employment of Autistic Adults

"When you go for an interview, it can be quite overwhelming and stressful. So imagine being an autistic adult. They've got a lot of strengths, but they find social interaction difficult, so they may not come across in the interview very well. What I'm saying is to be a little bit more flexible on how you interview autistic adults. For example, phone interviews might be easier for them."

The Barriers to Employment of Autistic Adults

Although autism spectrum disorder affects an estimated 1% of the world's population, today, more than 80% of autistic people are unemployed or are in a low-skill level role that doesn't fully leverage their talent. Since many on the spectrum may lack the communication abilities to get through the screening and interview process successfully, this is often one of the biggest challenges and barriers for autistic adults who seek employment. However, this doesn't mean they lack the intelligence, skills and expertise to thrive in the right role. Hence, society and many businesses miss out on the opportunity to benefit from the strengths people with ASD can bring to the workplace.

"When applying for jobs, a lot of autistic adults don't put that they have autism on the application form. The reason is that they're worried about being discriminated against. I know quite a few who have done that, and when they get the job, they tell their employers afterwards about the difficulties they're facing. So get to know the person," advises Anna. "With more and more adults now being diagnosed, neurodiversity is a big talk in the media. However, only 15 to 20% of autistic adults are in full-time employment today. And that's really sad because they have so many unique skills and abilities, and they can fit perfectly in certain jobs. They can offer so much, and they can be so loyal and fantastic at their job – you just need to find the right niche for them.

"I remember watching a programme on television called Employability. There was this autistic adult who had applied for over 100 jobs. Through the show, a company agreed to offer him work experience, but he was initially finding it difficult, maybe because he was a little bit quirky and had a few ticks. One day, the computer system broke down at the company, and they couldn't find out what the matter was. And it was this autistic person who actually identified the problem and what the whole department couldn't do. Of course, they offered him the job after his probation period, and he couldn't believe it. It was so emotional; I was crying watching it. They gave him an opportunity, and he proved himself. Obviously, he's still working with them, and he's thriving. He can trust them now," says Anna.

"Another big issue for our children and adults with autism is trust. Because they have been bullied and let down so many times in their life."

 

Dance It Out

Anna describes herself as "quite a positive and strong person," but was there ever a point in her journey when she thought enough was enough?

"No, I never said that. A lot of people wonder how I am always smiling, especially since I've been so sleep-deprived for decades. But I am quite a positive and strong person. I've had so many mums on social media saying to me, we see what you're doing, Anna, and you motivate us to keep going. Messages like that also motivate me to keep going.

"And I'm not saying that I don't get down every now and again. Everybody does, especially when I'm really tired. For me, the worst thing is the lack of sleep, but this has been my life for 30 years now. And, yes, things can get difficult. As a parent, you've got so many hats: you may be a wife or a partner, you're juggling work, you're struggling with the system to get the right provision for your children, and you're trying to help others as much as you can at the same time – that's a lot of pressure.

"So, you need to take some time out for yourself; otherwise, you're going to burn out. That's why we have a wellbeing ambassador now. Giuliana puts an article on the charity website every week about different tips on how to look after yourself and your children and how autistic adults can look after themselves. We also started a campaign called Take Five. Do yourself a favour and take five minutes, no matter what. Go for a walk, have a bath, go in a room and jump up and down and scream. Whatever it is that you need to do just to be you – not a wife, not a director, not a chairperson. Just you.

However, Anna understands that it is not always easy to find time for yourself when you're a parent of children who have a disability, especially if you are a one-parent family. She also admits that she sometimes felt guilty about taking time out for herself since she felt she had to be focused all the time on her sons, looking after them.

But parenting children with autism and overlapping conditions can be very challenging, not only for the parents but also for their children. The parents or carers are "the glue holding everything together", and if they're constantly stretching above their limits, they're eventually going to break. So, she advises parents not to be so hard on themselves – "you're already doing the best you can, taking it a day at a time.”

Anna-Kennedy-Online-Dance

"I used to like tap dancing when I was a child. I stopped doing it when my sons were born because of the difficulties they had. One day, I saw an article in a newspaper saying, 'Tap for Fun.' I immediately thought that's what's missing," remembers Anna. "So, I started dancing again, just for one hour a week. I called it my 'autism-free zone'. I used to go there and not think of anything.

"I must admit, the last two years I haven't been going, but I still dance at home or in the office just to boost my wellbeing, and people can also admire my moves on my social media now."

 

"What Happens When I'm Gone?"

When you have children, you can't help but dream about their future, about their achievements in school and work, and their successes in life. But when your child has been given a diagnosis with autism, you might think of the future in a different light. Along with the acceptance comes the worrying about all the what ifs. And then, one day, it hits you. The same question that hits every parent of an autistic child at some point in their lives: What will happen to my child when I'm no longer there?

"Who's going to look after my autistic son or my daughter when I'm no longer around?" That question is at the back of every parent's mind, says Anna. "I've been speaking to quite a few autistic adults who think about that as well since their parents have supported them throughout their life. In health and social care, many local authorities don't know how many parents are caring for their adults at home or what kind of support they're providing them. So, how can the right support be in place for them if they need it?"

For this cause, Anna has set up a petition on change.org, which has gathered around 14,000 signatures today and is trying to get more people to sign it. "Freedom of Information data reveals that only 1 in 4 councils are able to support disabled people and their carers to make contingency plans for future care options; only 1 in 3 LAs are aware of how many disabled adults are currently being cared for by family and friends at home," according to the petition. Parents with children and adults with a disability are feeling the pressures and are calling upon the government to ensure better planning and funding for future care needs so that the right support is in place at the right time.

"When my husband and I are no longer around, we want to know that there's support in place for our sons," says Anna. "We also provide workshops where you can set up a trust so that social services don't come in and take all the money, and then your child ends up in some horrendous place. Lately, there's been a lot of stuff on the media about adults and children being in treatment units far away from home, in really inappropriate provisions. A couple of days ago, I was reading about a mother of a 10-year-old boy who went to the local authorities for help. Now the boy is stuck in this awful place, in a hospital room with just a mattress on the floor, because there wasn't anywhere else for him to go. Those are the sort of things that worry parents who have children and adults with a disability or who are autistic. That's why I'm trying to put as much in place as I possibly can, for as long as I can."


Final Thoughts and Advice

Anna-Kennedy-OBE"From some of the training we provide to companies and organisations, I've realised that still many people don't share with their colleagues that they have children or relatives who are autistic. They keep it to themselves because they think they might get judged or stigmatised. I don't understand why people hide such things. It's nothing to be ashamed of. Our kids have so much to offer. It all comes down to raising awareness and acceptance.

"If you're a parent, especially at the beginning of the process, get support," is Anna's advice." You're not alone, and you don't have to struggle by yourself. There are many parents out there who understand exactly what you're going through and can help. Parents love to support each other, and Facebook is a good platform to share your thoughts, your struggles, but also your child's achievements. It might be something really small, but people who've got kids on the spectrum will totally get you and celebrate with you. It's good to have somebody to talk to, and don't feel like you're alone."

"Never give in. Just keep going, keep pushing forward and never take No for an answer. If someone tells you No, find someone who's going to tell you Yes.
That's what I do." –
Anna Kennedy

 

 

 

How to Offer Help or Get Support

Over 700,000 people in the UK are autistic, which means that 2.8m people have a relative on the autism spectrum. If you're one of them and you need support, or you just want to offer your help to those who need it, here's how you can contact Anna and the charity.

 

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Topics: Diversity & Inclusion (D&I)