autism

A Parent Perspective: Interview with Amanda

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This is my latest interview in an occasional series – A Parent Perspective, I spoke to Amanda about life with her four children. Her son, Matthew, has a rare chromosomal disorder and Amanda has battled to get the support Matthew and her family need. Her tenacity is extraordinary but working against the systems that are meant to support has been difficult for all of them.

My son, Ben, is 12 and I knew very little about disabled people or parenting when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences and I hope you might too.

Could you describe your family?

My husband and I have four children who are all quite close together. They are 16,14, 12 and 10. Our 12 year old, Matthew, was born with a chromosomal disorder called 47,XYY which means he has an extra male chromosome.  He is non-verbal with complex learning difficulties and autism. Matthew‘s siblings are great with him and I think it’s taught them so much. There’s so much to consider with Matthew just to keep him safe, and I constantly worry if I’m there enough for the others. 

How would you describe Matthew, and what are his particular challenges?

Matthew loves music and being outdoors. He has a wide taste in music, everything from heavy rock to salsa to Gangnam Style. So there is always music playing when Matthew is around, although he likes nothing more than to press repeat over and over again on a particular track so we never get past the intro!

Matthew is cheeky and inquisitive and has a great sense of humour.  What makes life hard for him is his sensory processing challenges and difficulty with communicating – he’s nonverbal but can be very noisy! We all do some signing and he has a talker on his iPad that he’s learning to communicate with. It’s difficult for him in the wider world because other people don’t know signing.

The lack of communication leads to a lot of frustration. Sometimes he’ll be doing a sign that I haven’t seen before and he’ll look me in the eyes, coming up really close, like he’s trying to say, ‘Why can’t you understand what I’m trying to tell you?’ He has no sense of danger. He’s always on the go, doesn’t sit still, and doesn’t have a sense of social norms or personal space.

How you get the diagnosis of Matthew’s genetic condition?

When he was born it was suggested that he might have Down syndrome because of some physical features.  After a week of waiting and wondering, we were then told everything was normal. About a week later, the consultant phoned to say the blood tests had shown something in Matthew’s chromosomal pattern. At a hospital appointment we were given a Wikipedia print out to explain that Matthew had an extra male chromosome, but we were told it wasn’t much to worry about – he might need a bit of extra help at school.

Matthew was slow to roll over, then crawled when he was about a year old. He started to walk when he was about three but he wouldn’t tolerate wearing shoes – he would scream and kick. I was thinking about autism because he would look up into the distance, and liked to be on his hands and knees and spin a lot. A paediatric nurse agreed there were enough traits to say it looked like a ASD diagnosis. I thought we might get some help as a result but didn’t.

What has Matthew’s school experience been like?

I had come across ABA (Applied Behavioural Analysis – a particular way of teaching children with autism) when Matthew was in preschool and I was very sceptical, but we did an hour a week and saw a change in him. It was all about play at that age, but we started to introduce some learning goals and it went really well. I found out you can run an ABA programme in a mainstream school, where trained tutors support the pupil alongside the class teacher, but once we said we’d like to do so the local authority said Matthew should go to a special needs school. We had to fight and went to tribunal with an advocate and reports to show why he needed it. It was an awful experience to go through, having to argue our case and be cross examined by an aggressive barrister who referred to our son as a ‘drain on the state’. After that stressful experience we won and Matthew started in reception.

Running an ABA programme in a mainstream school brought its challenges. We were responsible for employing the tutors and I felt like an HR and payroll service. If a tutor was sick, Matthew couldn’t go into school. There were lots of challenges trying to get speech and language therapy from the local authority – nobody saw him for two years. When it came to his secondary transfer, the local authority were suddenly interested and wanted to assess the effectiveness of the programme, despite having shown little to no interest over the years. We said he needed to go to an ABA secondary school because that was the only style of learning he was used to and had made excellent progress. The local authority refused, insisting it go to tribunal, although they didn’t have a leg to stand on. Again we went through the expensive process of employing an advocate and getting our own reports from independent professionals. At this hearing the local authority brought witnesses that had never met Matthew and the judge dismissed them in the first 10 minutes and agreed to everything we were asking for. The whole process was unnecessary and made me wonder what happens to the children of parents who don’t have the knowledge of the system or the financial means to fight it. 

Matthew started at an ABA special needs secondary school last November and it’s going really well. He spends a lot of time exploring the school and they’re gradually easing him into more academic tasks. I feel like finally we’ve got him what he should have always had – regular speech and language, OT and physio input. He’s learning how to interact with others and life skills, which is really what I want for him. I’ve found him being at a special school quite hard to deal with as a parent – not that I was in denial about his needs, but coming to terms with the realisation that he’s always going to need someone to keep him safe.

How much support are you getting out of school?

It’s been an ongoing struggle over the years to get any help.  A few years before lockdown, after many years of refusing, the local authority agreed for Matthew to go to a respite home locally. We built up to three weekends a month and some nights during the school holidays. It was incredibly hard because we missed him so much but it allowed us some breathing space. When Covid happened, the home shut immediately which was tough but we just got on with it because everyone was in the same boat. Sadly it then closed permanently.

Since then I’ve lost count of the number of emails I’ve written (often ignored) and phone calls made (and not returned) pleading for support.  We have jumped through so many hoops and a huge amount of intrusion and judgement to then be met with responses such as “Senior management have not agreed to your request” or “Matthew is not at risk of harm so the best place for him is the family home”.  It felt like we were stuck in this Catch 22 situation where you only get help if you fall apart. 

The irony of all this is that whether it’s social care or education, when you have a child with special needs so much time and energy is spent fighting the system when you are already exhausted. 

Recently we have managed to secure a new respite placement for our son which was not easy. The system of processes and procedures is not set up to help parents of disabled children. I have so many feelings of grief and guilt, of not being a good enough parent, of not being able to cope. Deciding to place our child in regular overnight respite has been one of the hardest things I’ve ever done.  Each time he goes I feel my heart breaking a little more. 

Having a disabled child has opened my eyes to how parents are left to get on with it on their own. I would have assumed that if you need help – such as speech and language therapy for a child who doesn’t speak, or respite so you can recharge your batteries to look after your child – you’d be given that help, but that’s not the case. I’m angry about this and wonder if I’ll ever get to the day where I’m not battling? I have a dream of building a respite home for disabled children because I don’t want anyone else to go through these struggles.

You are a Pilates teacher. Is there a link between being a carer and doing Pilates?

Pilates has been my saviour, in giving me an identity other than mum or carer but also in keeping me strong physically and mentally. Sometimes it’s difficult to fit in my own practice, but without it I would have gone mad by now. It’s a chance to forget everything else and just move. Movement is a kind of meditation. When I’m teaching, I’m totally in the zone, and I have great clients. You build up a relationship and help people make positive changes which is very satisfying.  I also teach in a forest so being outside in the fresh air is another bonus.

Some names have been changed.

Amanda is on Instagram at @kemp_pilates

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A Parent Perspective: Interview with Jo

/ jess / 1 Comment

My son, Ben, is 12 and I knew very little about disabled people when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Jo. Jo’s eldest son is disabled and her personal experience motivated her to look at the wellbeing of parent carers in her professional work as a psychologist and writer. I loved talking to Jo about how she’s balanced working and caring over the years, which I think is a familiar challenge to so many of us, and how she’s making sure her research is useful to parent carers.

Could you describe your family?

I live with my husband and three sons. My eldest is 14, and then I have a 13 year old and a nearly 10 year old, and we live in north London. I often describe our family as quirky which I’ve come to embrace.

My eldest son is disabled – he has cerebral palsy, learning disability and autism. He’s in a good place at the moment. His sense of humour has come out – he’s discovered some swear words that he’ll suddenly shout out at tea time and I find very funny (and he knows he’s being cheeky). I don’t want to undermine how difficult it has been to get this good place, so I appreciate and enjoy it, but it can feel precarious.

What are your son’s favourite things?

He is happy and really settled in a special school. He loves pizza and chocolate cake, and transport. Once a year I take him away on a train and we went to York in the summer which was special. He sits on the train and shouts ‘All aboard!’ which makes me chuckle. He loves being out and about, for coffee and a cake, to sit on the bus.

In the house, and during the school holidays, it’s quite difficult to entertain him other than TV, iPad, iPod. He likes the trampoline, pacing around. He used to be absolutely terrified of dogs and it was getting to the point we couldn’t go to our local park because he’d scream or run into the road when he saw a dog. But we got a dog three years ago and she’s been incredible, and then we’ve just got a new puppy who we hope will be more playful and interactive. My son loves throwing a ball or a stick for the dogs, and they have now become a big part of his everyday life. He gives them fresh water, puts their food out. He’s in charge of letting them in and out of the garden and they have cured him of his phobia.

How does his disability affect his day-to-day life?

He is very mobile and walks and runs around. His memory is not great so we break things down for him with lots of repetition. That can be quite hard when you’re very tired. His speech is quite affected. Something I found really hard to get my head around with brain injury is that some days it’s like he’s firing on all cylinders – he’s funny and fast, tells my husband he’s going to put custard in his slippers – and it feels like this is him. Then another day he won’t respond – he’ll be staring out the window and it’s like the neurons just aren’t connecting in the same way. I think some of it is tiredness or when he’s coming down with illness. I’ve learned over many years that when he’s getting ill he has a couple of weeks of feeling grotty but it doesn’t show, so I wonder why he’s being so irritable and then it all comes out and he’s lying on the sofa and needing me.

It was interesting during lockdown that he was so well and his behaviour was amazing. It was only when I went to a training session a few years ago that I heard someone say that people with learning disabilities can be more prone to illness, and illness can really affect behaviour. I sometimes feel guilty for not realising these things sooner. You need to know these things to empower yourself, and also to know that some changes are temporary which makes difficult periods more bearable.

Your two eldest sons are quite close together in age. What were their early years like?

After my eldest son was born we were so delighted he had survived following a traumatic birth and we didn’t fully have an idea of what his diagnosis meant for him. Then when my second son was born it was really tough because it was when some of my eldest son’s difficulties became more apparent, when he was 18 months old. I was full of hormones, and I couldn’t recover from the birth with two kids under two. I had some difficulties trusting other people to look after my eldest son, which may have been the case anyway but was exacerbated by his difficult birth, and childcare was expensive so I didn’t get enough support. I remember I had to put my second son on a chair on the sofa, with a footstool in front, to stop my eldest son getting to him and scratching his face. I’d found a way that kept everyone safe, but the health visitor came round and said I couldn’t put a baby in a chair up on a raised surface. It’s difficult when people come into your house and make comments without having an alternative solution. You are quite exposed when you have a baby anyway, but when you have a disabled child that is magnified – the number of people coming, looking, commenting, telling, advising. It can be quite disheartening as a parent. You’re having to prioritise what’s the most important thing at the moment. That’s why parent carers have such amazing skills.

How did having your eldest child affect your career?

I was a psychologist in primary care in the NHS before I had children. After my eldest son was born it was just about manageable, but then his appointments really increased and I had my second son. My eldest was getting ill a lot and there was a lack of flexibility from my employers and it became too difficult. It was a really hard decision to leave my job because I’d worked really hard for it. I know lots of other parent carers have this difficult decision to make – you like your work and it gives you purpose and meaning, but then it adds to the stress so much that it becomes untenable.

I gave up work for a bit, and then I started working in counselling for a charity supporting male survivors of sexual abuse. The team that I worked with and the work I did there was incredible, but I kept coming back to emotional wellbeing in parent carers and wondering why no one was talking about it. It felt like a hidden thing that wasn’t acknowledged because everything is about the child. I was mulling this over for a long time before I decided to go back to do a Doctorate and research that topic. I started my Doctorate when my eldest son was 10 and it took me for four years.

Before that I had set up my website Affinity Hub (www.affinityhub.uk) to signpost to emotional support because I was hearing anecdotes about general counsellors not really getting what parent carers needed and I thought there must be some people with expertise in this area. I wrote a few articles for journals in therapy and counselling and found counsellors that were often parent carers as well, or had worked in the field for a long time and really got it. I also did a brief survey on my website because I was curious about how parent carers were feeling. The response I got to that drove my desire to do the doctoral research, which then fed into my book Day by Day: Emotional Wellbeing in Parents of Disabled Children which was published earlier this year.

What did you find in your research?

To feel well, you want to feel like you have some control over your life and that came through really strongly in my research. The importance of connecting with positive other people as well and how for some people their family or friends could be such a strong support and for others those were the very people that had really let them down. The importance of finding other parent carers, which was not surprising but so strong. Also the importance of the connection, the love and strength of feeling that parent carers have towards their child. I think a lot of parent carers develop an awareness that we don’t have control over life, and it can be difficult at times. There is a kind of a wisdom – you see what’s really important, and that things are fragile and precious.

it was so important to me that something practical came out of my research because having felt quite alone in some of my difficult feelings in the early years, I was shocked at how many studies were out there about risks to mental health for parent carers. I’d never read about these studies and I was a professional in the mental health field. When I found that research I thought I’m not alone. I’m not a failure. It was so powerful, but also made me really angry that it’s not better known. It’s important to me that research gets to the people that need it and I worked not only on my book, but training for professionals and the NHS about how they can better support parent carers.

Has your research made you think you would have done some things differently?

A common theme was guilt, and giving yourself a hard time for things that you could have done differently. I’m reading a lot about self-compassion at the moment and I think it’s so important for parent carers. You’re only human, you can’t know everything, you made the best of things at that time. There are things that I would have done differently, but I try to not give myself a hard time about it now. There are certainly things that I would want to have been different with the support around me, and the support around all parent carers. My big bugbear is acknowledging the emotional impact, which I think is still rare or done very insensitively.

Have you done any research into siblings of disabled children?

A lot of parent carers I spoke to felt that there could be a tendency to overcompensate for siblings. To give them amazing days out and let them get away with things, being desperate to give siblings amazing memories.
I felt guilty for a long time about my middle son because he was born so close to my eldest. I tried to protect him as much as possible but I’m sure it was stressful for him because of some of the behaviours of my eldest son. Now I look back and I don’t know what more I could have done. It was the nature of the experience.

It’s interesting with siblings because they go through phases of getting on. Initially, my eldest and middle were quite close, then my eldest and youngest, and then my youngest and my middle sons. I think you have to remind yourself that those dynamics would be there anyway, disability just adds an extra thing.

When they were all younger and my eldest son disturbed a game, for example, I would say ‘It’s not his fault, he doesn’t understand.’ I was hoping that they would get an understanding of their big brother’s needs. Then I went on a Sibs training course, and one of the things that adult siblings of disabled people reported as hating hearing the most is, ‘Don’t give your brother/sister a hard time because they can’t help it.’ Or ‘it’s not their fault’. So I’ve stopped saying that but it’s an ongoing learning process!  Being a parent is hard, managing all these dynamics, and you never know if you’re making the right decisions at the time. I think it’s important to keep hold of the idea of ‘good enough’ parenting rather than expect perfection. There’s no such thing as a perfect parent, you just try and do your best.

You can find Jo @affinityhub.uk on Instagram, Twitter and Facebook

Jo’s website is here: www.affinityhub.uk

You can order her book Day by Day: Emotional Wellbeing in Parents of Disabled Children here

A Parent Perspective: Interview with Fiona H

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My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Fiona who has three sons. Her youngest son, Joel, has just turned 18 and is autistic. I really enjoyed hearing Fiona talk about the dynamics in her family now her children are adults.

Could you describe your family?

I have three sons: Samuel is 24 and he is very close to Joel, my youngest, who just turned 18. My middle son, Ethan, is 20 Ethan is also extremely close to Joel and they have a unique relationship. Joel was originally a twin but I lost the other baby during the pregnancy.

Joel didn’t sleep for the first six years of his life and didn’t meet milestones. He didn’t walk until he was about two and he had very little speech. Because I had two older children I knew there was something going on with him and I took him for an assessment when he was 18 months old. A professor in Glasgow said he thought what happened in the womb had something to do with Joel’s delayed development and he thought there might have been some brain damage.

Joel went to a fantastic special education nursery in Glasgow when he was two and a half, and then to a special ed school because his development was very delayed. His diagnosis was Global Developmental Delay, which is a massive umbrella term that they say when they don’t know what’s wrong.  When we moved up to Dundee, he changed school where he was assessed and eventually given a diagnosis of Autism Spectrum Disorder and Sensory Processing Disorder when he was 13. I didn’t have much support – my family don’t live here and my ex-husband and I split up, so I looked after the boys on my own.

Can you tell us a bit about Joel and what he enjoys?

Joel’s never really played with toys. His favourite thing when he was younger was a taking leaves and branches off trees and bringing them home to demolish, bit by bit, until they were gone. He’s six foot two and very skinny. He was a picky eater but his school have been encouraging him to eat everything. He has a very sweet tooth and he would eat chocolate all day if I let him. He loves music – there’s always music on in every room of the house and the car – and watching films. He’ll watch the same film for months on end and know every line.

His speech is coming along – he can say short sentences now, what he wants or he doesn’t want. He very rarely gets upset, though he bites his fingers when he’s frustrated. He’s good fun. The school describe him as being very gentle. He’s a really sweet boy who is affectionate in his own way.

Is Joel at school or college now?

A few years ago Dundee social services were pushing me towards employing support for Joel directly which I really didn’t want to do. They could offer me all sorts of things in theory, but in reality the funding is not there and I couldn’t bear the thought of Joel having to live with me for the rest of his life.

I wanted Joel to go a Camphill School, which is based on the Steiner method of education, because there was almost nothing for him in Dundee and they do a lot of learning outdoors which he loves. I had three friends help me with the application which took about six months, and we got him in. Dundee fund the place and it’s actually cheaper for Joel to be there than it is for them to offer the services they said they could at home.

The school has seven acres of land and they grow a lot of their own food which the kids are all involved in. Before Joel was going to school and coming home, not seeing any friends out of school. At Camphill he lives in the same house as five other boys, house parents and co workers. He eats almost anything now, which he never did before. He’s learned to ride a bike. The whole ethos of the school is to push the kids to the best of their ability. He has a great life there and is so happy.

How did you explain how Joel was different when the boys were younger?

There’s 21 months between Ethan and Joel. Luckily, Ethan was a very self contained and easy toddler because Joel took up almost all of my time. Samuel was six when Joel was born and he was very helpful. I used to say to the boys that Joel has a different brain to everyone else’s but it’s a very special brain, and they thought that was quite cool. We kind of knew that he was autistic, but we didn’t want to use the word until we knew for sure.

We dealt with things on a day-to-day basis. Every day was different. For the first four months of his life, Joel screamed the house down every time I bathed him. I was googling and it came up with loads of scary stuff, so I just went with my instincts and persevered. I instinctively knew he needed repetition and eventually he loved baths and now he loves swimming.

How quickly did you come to terms with Joel being different?

In my heart of hearts, I knew he was different. I didn’t say anything to anybody, not even my husband at the time, but I just knew from the moment he was born, when he cried for a few seconds and then lay in my arms and looked at me as if to say help. I think I wanted to hide it, keep it to myself, process it, before I could vocalise it to anybody. I’ve heard a lot of parents talk about the grief that they feel for the life they won’t have with their child. Mine wasn’t grief, it was feeling that I needed to prepare myself, pick myself up, dust myself off, then think this is going to be different. I was then able to get him assessed and tell other people.

I accepted it quite quickly. I’m very pragmatic and I thought I am going to deal with this head on. There were so many times that me and the boys would go out somewhere and have to leave early because Joel was having a meltdown. I used to get really embarrassed and upset. By this time, he was nine and tall so I’d have to physically lift him over my shoulder and sometimes people would stare at Joel. I felt like asking them, ‘What is your problem?’ But then there would always be someone who would come over and say, ‘Can I help you?’ There wasn’t much they could do, but the offer was so lovely. It was difficult for me to get the point where I could think I’m not going to make any apologies for Joel. This is my son. I’m taking him out of here for his own safety, not yours and I don’t care what you think.

How have you and Joel adapted to his needs over the years?

When Joel was younger I didn’t look too far ahead to the future. One day at a time. There were some hilarious things, but there were also some really tense and anxious moments. Now it’s just a joy to be with him and it’s not hard work anymore. I still have to monitor him, there’s still a lot of things that need to be done, and I couldn’t leave him on his own. But he’s so much easier. Joel has surprised me every step of the way, so I’ve been fortunate.

Now we can do almost anything as a family with Joel but it’s taken years of repetition. I first met my new partner about eight years ago and he’s a very outdoor person who loves going walking in the hills but Joel used to run off. We almost had a helicopter out once to find him because he went missing. But we kept doing what we were doing until he learned not to go too far ahead and always to wait. Now we’ve climbed three Munros with Joel. He’s so fit and healthy and he’s in his element on walks. His love of the outdoors has reflected on the other two boys.

We can go out for a meal now too, albeit we tend to go to the same sort of places. If we go somewhere new, I’ll prepare him and he’ll always ask for a burger. Until recently, he’d get very upset if there was a baby crying but his school house parents had a baby last year and now just blanks it out. I think I subconsciously decided I wasn’t going to stop doing the things that I like, but try to expose Joel to things slowly. I wouldn’t put him through stress, but we just kept persevering with all sorts of things in a very slow but repetitive way. Now I can take him into almost any situation and he’ll soon tell me if he isn’t happy.

I persevered because I decided that Joel was going to have a really full and interesting life, and I wanted him to experience things. It’s the same at his school now. He learned to ride a bike last year at school and I went cycling with him for the first time this summer through a forest and it was such a lovely experience.

Are there things that you would have done differently?

I don’t think there’s anything I would have done differently with Joel. I didn’t read books about autism, it was all instinct. You feel like you should be doing all these things with your child, but actually you have to go at their pace. I learned that I couldn’t push Joel because he would very soon tell me that he wasn’t happy. I think the only thing I would do differently would be to have spent more time with the other two boys. When we would have to leave a party early I always felt their disappointment really deeply. They never complained, but I still feel guilty about that.

What has having Joel as a brother meant to your other two sons?

All kids are resilient but I think siblings of children with disabilities are even more so. Samuel has this inbuilt sense of responsibility. When he went to university, he phoned me every day for about two months asking how Joel was. I had to tell him that Joel is my responsibility not his. They’re so protective of their sibling.

I think my two other boys are very different to their contemporaries because of Joel. They’re very caring, very compassionate, and very protective of him. I have a really good relationship with the boys and we are very close. I think Joel has enabled that even more so than if he wasn’t there. My two have been through loads of stuff with Joel and they’re both very well rounded boys. We can’t imagine our lives without Joel. He’s enriched our lives in a way that has been amazing, and we wouldn’t change it.

You can find Fiona on Instagram here, and on Twitter here

A Parent Perspective: Interview with Anoushka

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My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Anoushka who has two sons, Spike and Oscar. Amongst the many interesting things Anoushka talks about is setting up Transport Sparks, a social group for young autistic transport enthusiasts.

How would you describe Spike?

Spike is 12. He’s very funny and charming with a good sense of the absurd. He’s quite a good negotiator – very skilled at getting us to add an extra leg to a journey, or more time on his devices. He loves going to the cinema, trains, hand dryers and adventuring around London. He’s also autistic and has ADHD (inattentive form), so he has some struggles with typical forms of social communication and he has sensory processing differences which can be a bit intense for him. He also has an amazing memory and a very interesting way of looking at the world.

When did you realise Spike wasn’t neurotypical?

From quite early on. He had a lot of trouble sleeping and feeding. He missed a few early milestones, he didn’t point or crawl. The books said all babies are fascinated by faces but he was not at all. Both my husband and I thought about autism before Spike was a year old. He started struggling in stay and play groups and while he started speaking at a year old, his language developed slowly. We went to see a GP when he was two, and had a diagnosis of autism by the time he was three.

How did you feel about the diagnosis at the time?

I felt like the possibility of autism had been rattling around in my brain for such a long time that it was a relief to have the question answered. There was an optimistic aspect to it because now we could get on with our lives. But it’s a challenging process to go through as a parent, to have to list the ways your child isn’t like other children, the difficulties they have.

Following the diagnosis, we were occupied with trying to set everything up – to apply for a statement of special educational needs, find a school, make sure that he was getting enough speech and language therapy, physio or OT. I didn’t feel too isolated but actually I hadn’t really come up for air and when I did I felt quite alone. I didn’t know anybody who had gone through anything similar and I didn’t really see other parents. At some point I found a very good group, mainly online, and we met up from time to time but it wasn’t really until I started meeting others through Spike’s special interests that I found lots more people who got it.

How was it having your second child?

I had reached a point where I had some mental space to think about another child. Although we were still in the process of getting Spike’s diagnosis, I’d reached a point of acceptance quite quickly and so if Oscar was going to be autistic that was fine, though I was alert to how he was developing. He was very different to Spike and him finding things easy felt weird and magical. He followed a more typical trajectory of milestones and it was a very different experience, a different delight. Oscar is now 9.

What were your expectations of what being a parent would be like?

I didn’t really have any idea what it would be like being a parent. My husband and I are slightly quirky only children and in some ways I expected to have slightly quirky children. I was excited to meet them and get to know them. I can remember having a picture in my mind of walking down the street with my child having a conversation. That took a long time to happen with Spike but I can remember the moment when it did happen and thinking, ‘Oh, we’re here.’ It was lovely to have that moment with Oscar, too and we reached it much more quickly than I expected! He’s a good talker.

How was school for Spike?

We had a relatively accommodating primary school and Spike had some good years, depending on the teacher. We had a lot of control over who worked with Spike so he was always really well supported. We were lucky that his year group were a wonderful bunch of children. Spike did a presentation to his class in year one about how things were for him and this helped his friends support him. It was always hard finding the balance between the academic focus in school and what we wanted to prioritise so Spike had time out of school. That’s a big reason why we asked the local authority for funding to home educate.

What’s your approach to home education?

Our starting point is always something he is interested in. We do project-based work and look for ways to bring in new information. We’re keeping our eye on the national curriculum and he’s a little behind his peers in some areas though he has some real strengths too. We work on Spike getting to know himself better, his communication, learning about the world and independence. We spend a lot of time out of the house because he loves travelling and learns well on his feet. He’s learning as much as he ever did, if not more. It’s a team effort with us, tutors and professional input.

In an ideal world I would like Spike to be at school but we can’t find the right place for him. There seems to be this idea that autistic children are either so-called ‘high functioning’ and can be integrated into a mainstream setting quite easily, or they have more substantial learning difficulties and higher support needs. I think a lot of autistic kids actually fall between those two. He needed more support than the mainstream schools could offer, but not at the expense of his education. It felt like we were being asked to choose.

How to do you talk to Spike about autism?

He knows he’s autistic, although we’re still refining his understanding of that. We’re introducing him to the idea that everybody has things they need support with and things they’re good at and he shares some strengths and weaknesses with the wider autistic community. It’s striking a balance between letting him know that if he’s struggling he can factor in the fact that he’s autistic, without saying that all the things he finds difficult are because he is autistic.

Could you talk a bit about Spike’s passions?

Spike always had things that he was very deeply interested in. It started with letters and numbers, then logos, idents. When he started liking the London Underground he had been quite anxious out of the home, and we saw that it was a way to broaden his horizons. He didn’t like the noise of trains but he also really wanted to be near them, and we wanted to help him work through this tension. It also gave us this shared experience of doing things together.

My husband and I usually take it in turns to go with Spike on a journey so we were spending every weekend going across London and it could be a bit lonely. I had heard that lots of autistic kids like trains but I couldn’t find any clubs. I tweeted saying, ‘Any other parents of autistic kids who like transport interested in getting together?’ and then I was inundated. I set up Transport Sparks – a social group for young autistic transport enthusiasts – about three years ago and it’s evolved into something brilliant.

When Spike meets up with a bunch of Transport Sparks they really connect with each other. They’re always so surprised that they have that meeting of minds and it’s also great for the parents to chat online and off.

Are there things that are challenging?

Spike’s anxiety permeates most aspects of his daily life and therefore our lives. That’s definitely more challenging for him than it is for us, but it’s difficult and affects the things we can do. We do a lot to try and mitigate it, but we can’t make it go away entirely. Spike does have some distressed or challenging behaviours from time to time. We’ve got better at supporting him and coping, ourselves, but it can be tough.

Has the way that you see the world changed since having Spike?

It’s a disgusting cliche, but I’m so much more empathetic than I used to be. I think it’s also made me feel more comfortable with uncertainty. I can’t see beyond a few months into the future, everything’s constantly under review, and that’s okay. It’s definitely made me more confident as a parent and self-reliant. There was a time early on when I thought the professionals had all the answers and now I realise that they are advisors and my husband and I know Spike best. We have to arrive at our own decisions. I hope I carried that forward with Oscar.

Are there things that Oscar finds difficult about having an autistic brother?

There are things which I don’t think he appreciates are, or could be perceived as, challenging – he doesn’t really see them that way. He’s found it more challenging as he’s got older. I’m starting to see that he finds it more difficult when, for example, Spike is very upset and he’s beginning to be concerned that he’s “adding to our problems” if he has difficulties. I have to be very clear that he can bring the good and the bad to us.

I noticed recently that Oscar was cross with himself for accidentally using negative language about autism and I felt bad that he was tying himself up in knots, but then also a little bit of me thought it was good that he was thinking about it and trying to choose his words carefully. I said as long as we think about our words, talk about them, we’ll be fine.

Is there a key thing you’ve learned about being a parent to Spike?

I remember a really clear moment of having a chat with someone in the playground and she asked, ‘What’s your son like?’ I gave her this terrible answer, like, ‘He struggles with this, he’s not very good at that.’ I burbled this all out at her and she didn’t really know what to say. It was a really clear moment of thinking that isn’t who Spike is to me. What am I saying? I’d adopted the language of the professionals. I thought I’m going to change the narrative and frame all of this differently, because it’s just not working for me.

I’m a rather self-conscious person and autism can be quite a loud, visible thing, but Spike has helped with that. He imitates transport noises and announcements when we’re out and if you’re feeling embarrassed or self-conscious about it, then other people pick up on that and everyone is tense. I’ve learned to just enjoy his enthusiasm and concentrate on him, and often people pick up on that positivity instead. Spike’s not particularly shy. He enjoys people and having conversations. We’ve ended up having so many more positive interactions with people than negative ones.

It took a while to unpack Spike’s way with words. He often uses scripting* and I would say 90% of that is meaningful – borrowed phrases used with intent. The rest is verbal stimming*, but even that is information. He’s letting me know he’s feeling a particular way. It’s all communication, if you’re paying attention.

You can find Anoushka here:

Blog: Spitting Yarn

Twitter @spittingyarn

Instagram: @spittingyarn

Transport Sparks Facebook group

*Definitions of some words:

Scripting is ‘the repetition of words, phrases, or sounds from other people’s speech.’

Stimming or self-stimulating behaviour ‘includes arm or hand-flapping, finger-flicking, rocking, jumping, spinning or twirling, head-banging and complex body movements. It includes the repetitive use of an object, or repetitive activities, speech or sounds.’

A Parent Perspective: Interview with Caro

/ jess / 1 Comment

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other parents with similar experiences.

This is my latest interview with a parent who is raising a child who is not typical. This week it is with Caro, who is one of the friendliest people I’ve met on the internet.



Can you describe your family?

There is me, my husband, and our children: a boy of 17, a daughter of 15, and my youngest son is 11. My daughter is autistic and has Pathological Demand Avoidance (PDA).

If you met her, depending on what your benchmark of neurotypical is, you might notice she’s different but she’s quite hard to spot. Behind that facade is an absolute ocean of anxiety. My daughter also has Obsessive Compulsive Condition (OCC, or OCD – whichever is your preference) which is part of the pathological demand avoidance. So whilst her brain is telling her, ‘You’ve got to be in control, you can’t do what this person is asking you to do’, the OCC kicks in and she will say, ‘I’m going to do it, but I’m going to do it my way’. They just fight each other all time and it makes life very debilitating.

Women and autism don’t have the greatest history. For every female diagnosed as autistic there are three males which means that a lot of women are being missed. Women present very differently and the current questionnaire, the system of how we diagnose autism, is based on male research.

Lack of understanding means that when I explain even to the most learned of healthcare professionals my daughter is autistic and has PDA, I’ll get a little head bob, and ‘I’m so sorry’. It really annoys me because that’s not helping anyone – her or the path that lies ahead for others. We need to change that whole conversation.

Was there a moment when you noticed your daughter was doing things differently to your older child?

She didn’t walk until quite late but I wasn’t overly worried. She was doing this thing as a toddler where she would turn my face to speak to her. I had previously looked after a little boy who’s deaf so I thought she had hearing difficulties. We took her to see a doctor and he said she has really bad glue ear but it will clear. When she started at nursery she was speaking and walking but she wasn’t socialising the way my son had. I went to see another paediatrician who wasn’t that worried and at the bottom of the note that he sent to my GP, it said ‘Mother worried’.

I’ve got a lot of ‘Mother concerned’ notes and it wasn’t until she was in year two that somebody started to take it seriously. By then she was on her third school. We had a terrible situation where she was being treated terribly by one of the members of staff in a verbally abusive way. My daughter had been told she was stupid, he would rip work up in front of her. He sent her down from year one to reception class. We removed her straightaway but I think that had lasting effects on her.

She was diagnosed with audio processing issues when she was seven but we started seeing more people privately because the waiting lists to get a further diagnosis were years long. When she was nearly nine she got the diagnosis of autism, and a year later, a diagnosis of pathological demand avoidance. By then her issues with executive function were obvious. She was still in a mainstream school and masking a lot, so a lot of what we were being told wasn’t really fitting with her behaviour at home.

At one stage as a family we didn’t go out socially for about a year, not because we were embarrassed about her behaviour, but because it was so upsetting and difficult for her. We would parent the children almost separately, so my husband would sometimes take the boys and I would take my daughter. I think that was an error – I think siblings should be exposed to it all – but at the time we felt it was a lot for us and for them. My husband played sport for a living and therefore he worked at weekends so I was on my own a lot with all three.

How do you approach language around autism?

I listen to autistic people saying, ‘This is how I want to be addressed,’ and I use that language in my family. I’ve always felt that communication is the key. Where you don’t have information there is a void, and people can fill it with anything they want. There is no embarrassment to any of my daughter’s diagnoses.

How do you judge how much to share about your daughter?

I don’t want to give too much of her away, because I think she deserves her own social media footprint. I think we want to make sure that we maintain a level of respect for the person that we’re raising, because I would hate for my daughter to read or see something upsetting. But I felt very lonely for a very long time, because there were no other parents at her original schools that were in a similar position, and it felt very isolating to me. When I started sharing on social media, people said, ‘Me too’, and it felt less lonely. It’s a difficult line and I often sit back and take a break, but there are phenomenal support groups on social media.

I realised, probably a bit late, that I was putting her face up and then rethought. I definitely was guilty of saying, ‘Oh, woe is me,’ a few years ago. What I didn’t do enough was sit and listen, because my daughter isn’t the first autistic person to be born and she won’t be the last. I’m listening to autistic people because I can talk about my learned experience as a parent or carer, but I can’t speak about what it’s like to be autistic. Most of the information that we have has been from healthcare professionals that are neither autistic nor raising those that are.

How has your approach to your daughter’s autism, or parenting, changed over the years?

My daughter had a lot of behavioural issues when we were out when she was younger (which makes perfect sense now) and my eldest son found that exceptionally challenging. I was saying, ‘You go and play with your friends, everything is fine.’ I didn’t really know what I was dealing with and didn’t feel supported, even though I’d read every available book and seen countless doctors. Actually what I was lacking was self-confidence. When I read your book, I saw you got your confidence early and I envy that.

Anyone that’s ever been into a meeting with their Local Authority will know it’s probably one of the most terrifying things you’ll ever do. I remember sitting in a meeting about her, listening, and when I walked out I said to my husband, ‘They’re all completely wrong about her. I’m never going to go into another meeting so ill prepared again.’ The next year I spent weeks preparing for the meeting and handed a booklet of papers out to everyone. I said, ‘I’m really uncomfortable with the language that you’re using.’ I corrected things that were wrong. It’s not about dismissing what professionals are telling you, it’s that not everything will apply to you and it’s about getting the confidence to pick and choose what will help your child and your family. I think that starts with looking on social media or reading a book or finding people in similar situations.

My husband, Will, is the most incredible support. I’m the primary carer and I struggled with not earning money for a long time. I didn’t want to be a burden but I undervalued what I was doing because caring isn’t valued by society. When I’ve sat through those hideous meetings thinking I can’t do this, he’s there saying, ‘You absolutely can.’

My husband and I are very different. I am over communicative, he under communicates. We are polar opposites in lots of ways, but our life goals and the way we raise children has been in sync. I do think there is luck involved. My family are really important support to us – especially my mum.

I get messages from people saying their family members have criticised how they parent their autistic child, how they should be firmer. How can people not see how unhelpful and damaging that can be? I remember someone very early on into our daughter’s diagnosis a friend sending me a link to an article about how to cure autism. It’s what’s called ‘soles of your feet’ behaviours – things that you can’t see that you do, that you forget are there, but they’re part of you. If people that love my daughter will say or send things like that, then heavens only knows how we’re ever going to make the path less challenging for her and people like her.

No child comes with a book of instructions. I spent far too long looking back and thinking we should have done things differently. I think that would be the advice I would give myself now: you’re doing the best you can at the time. I think we made terrible errors with my daughter when we didn’t know what was going on, where I was telling her off for doing something she had no control over. I didn’t know what else to do at the time.

Do you think there are things that you’ve learnt through parenting your daughter that have changed the way you are with your other children?

Yes, definitely. There are loads of things that my daughter has taught me that has made me a better mum. I’m much more patient. I now always listen first, there is absolutely nothing off limits. I think I would have been far more staid had it not been for her and the way that she is. I have seen now that behaviour is communication so rather than reacting straightaway, I’ll ask, ‘What’s going on?’ My daughter taught me that trying to fix things is no good when the situation is full of anxiety, noise and stress.

How has parenting changed you over the time that you’ve been doing it?

I think I am a much better person. I used to look back and regret a lot. This is not how I thought my life would be – not being negative, it just isn’t what I expected. I am now more than okay with that. It’s absolutely wonderful.

I think as carers we sit on a tightrope between our children and people that aren’t like our children, and we want society to meet a little bit in the middle. I want people to understand that it can be difficult, like any parenting, but there are so many incredible parts. I’m trying to listen to autistic people whilst caring for someone that is autistic, whilst not being autistic myself.

I wouldn’t change my child, not for me, but I’d take away some of her anxiety and her challenges if I could. My daughter has changed us all and she is glorious and brilliant (with splashes of, ‘How are we going to deal with this?!’) My boys are better humans because of their sister. My husband is entirely different to the man that I met 25 years ago. I absolutely wouldn’t change a single tiny hair on my daughter’s head. I am so glad that I am her mum.

You can find Caro on Instagram @spikey and Twitter @CaroTasker

A Parent Perspective: Interview with Penny

/ jess / Leave a comment

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I am interested by how and when this happened. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently, but I was just doing my best with what I knew at the time. I think I would have found it helpful at the beginning to have read stories of other parents with similar experiences and so I am interviewing parents who are raising children who are not typical to discuss parenting, language and expectations. This week it is with Penny Wincer, who managed to fit in a call with me to answer some questions.

Could you describe your family?

I’ve got two children. Arthur is 11 and Agnes is eight, almost nine. We live in South London though I’m originally from Australia and I’m a single parent, though I have a boyfriend who doesn’t live with us. 

How would you describe Arthur? 

Arthur is autistic and he has learning difficulties. He can speak but his speech is not typical. He’s a really happy kid but when he’s not really happy, he’s quite unhappy. There’s quite a roller coaster of emotions, which are quite extreme, so it’s never boring!

What does Arthur love doing? 

He loves anything really stimulating like fireworks, trampolines, funfairs and bright lights. He loves sand, the beach, water and waves. I gave him some helium balloons this morning and they make him so happy. He also really likes cuddles, wrestling, hide and seek and chasing.

When did you realise that Arthur was maybe different to other children that you knew, or to typical children?

At around 18 months old it became obvious that he wasn’t quite in the same place as his peers. I wasn’t concerned at first, but he started having really serious meltdowns which seemed more intense than other kids. He was always happy or sad and there wasn’t much inbetween. 

When he was around two my daughter was born and he reacted really badly. He either ignored her or got really upset when she made a noise. That was when I thought there’s something different here. I spoke to the health visitor at first and because I wasn’t that concerned, she wasn’t either. Arthur’s eye contact with me was really good and I hadn’t realised that he’d stopped doing many of the things he’d done when he was younger like turning round when someone unfamiliar called his name.

I asked for a referral and did a lot of research. In the first appointment with a developmental paediatrician, when Arthur had just turned three, she asked us what we thought and Arthur’s dad and I both said, ‘we think he’s autistic’. She said it was too early to confirm, but agreed it was likely to be the diagnosis eventually. We were expecting it so we weren’t shocked, or even that upset, when it happened.

We were first time parents so we didn’t have other children to compare him to, but seeing the developmental reports in black and white was really hard. I’d had no concerns about Arthur in his first year but I can look back and see he was a bit different. By six to nine months old, Agnes was doing things that Arthur couldn’t do, like waving, and it was a real shock. 

When he was diagnosed we thought we’d get some help but really nothing was forthcoming and that was disappointing. We had to start the long process of a statement of special educational need (now Education, Health and Care Plan) when he was three and a half, and he then went to a mainstream school with one-to-one support. He did three years there which he didn’t hate it but he wasn’t thriving. He needed specialist teachers and a low stimulation environment, so he then moved to a specialist school and it is absolutely amazing. I feel so much more supported as a parent. 

Can you talk a little bit about how Arthur’s disability, if you would use the word disability, affects his day to day life, and your family?

I do refer to his disability unless I need to describe his needs specifically, and then I might say autistic. Sometimes I prefer ‘disabled’ because not everyone needs to know his needs all the time. Sometimes they just need to know he has accessibility needs. I don’t shy away from the word ‘disabled’ because I want my son to be comfortable with it, and I want the people around him to be comfortable with it. It’s a fact. 

Arthur is incredibly rigid and struggles to process information if things are not the same all the time. That means that we have really fixed ways of doing things and if there are any changes it can be quite traumatic (and I don’t use that word lightly). Now he can use language he becomes fixated on and repeats things. He’s generally an anxious child and he finds the world quite scary, and that means him repetitively asking to do the same thing over and over again, to hear the same answer and to understand. Keeping him in routine is really important because then he’s less anxious and more able to engage in the world a bit. He needs a lot of sensory stimulation – lots of physical activity, jumping, wrestling, running. If he gets enough of that, then he’s calmer.

He can use concrete language, so he can point things out to me and ask for some things. But he can’t really use abstract language to tell me how he feels or about something that happened previously or in the future. The way he uses speech is not typical but it’s improving all the time. Speaking is so useful for him but people don’t understand that it doesn’t make him less autistic. It’s still really hard for him to get his needs across. He’s started echolalic speech, so copying things, especially from TV. He’ll be just scripting to himself and he’ll say what seems like nonsense to everybody else over and over again, but then he’ll learn to use it in context. The first time he called me Mama was when he was about four and a half and he learned it from the film of The Gruffalo. 

He doesn’t have friends in the typical sense but he connects really well with other adults and is a very good judge of character. When he was really little that concerned me but now I know he can connect with adults and he will be an adult, so he will have friends who are peers eventually.  

In what ways is your life how you expected? And in what ways is it different?

It’s so different to how I expected. One of the biggest things is that I’m Australian and Arthur can’t fly so he hasn’t been to Australia since he was one. It’s been a really big deal that I’ve had to get my head around. I go on my own, occasionally, and I will take my daughter eventually, but it’s complicated. It would be wonderful if the kids could know their extended family.

I never expected I would be in a situation where I’m so reliant on the outside world and how precarious that feels. For example, I’m dependent on the local authority for Arthur’s school, transport to school, holiday club, and that dictates how and when I can work. I never expected that my choices would be restricted like that. At any moment, something can change (particularly in the last nine months) and I’ll have to completely reshuffle my life to replace whatever has gone or changed. It’s one of the things that I find most challenging. It’s quite hard to explain to people the lack of control and the lack of options that I have with a disabled child.

I think the difference between being a parent of a typical kid and being a parent of a child with a disability is it’s not better or worse, but we might need more – more rest, more breaks, more help. It’s all fine and manageable when I get the extra help I need and the extra rest I need. I don’t wish it away. It’s just different. But when you have all that taken away, suddenly you realise just how quickly you’re hanging by a thread. I need help and rest to be a together human, a good parent, friend or girlfriend. I think that’s true for everybody, I just think it’s a bit more extreme for those of us with kids who need a bit more from us. 

But I think it’s as good as I expected it would be. It’s also way more challenging than I expected, but I think most parents would say that. Parenting is more emotionally extreme than I expected. I thought it would be a bit more calm and stable. I’ve coped with way more than I thought I would. I have a life that I love. I have moments where I’m definitely not coping, especially this year, but generally I have a really lovely life. 

How has your parenting and your approach, particularly to Arthur but maybe to both your children, changed over time?

I think when he was first diagnosed, I was in a panic about how much support he needed and how quickly he needed it. Everything I read was about early intervention but nothing was being provided. I went looking for play therapists, paying for private occupational therapy. I changed his diet. I was stressed out to my eyeballs becoming an expert. And thank god I chilled out because it was completely unsustainable. Eventually I calmed down and realised I can’t control this. I accepted that we’re never going to get the right amount of support, and we’ll just do our best with what we can, which is not easy. The thing that scared me so much when Arthur was three or four was the fear that I would be the reason he didn’t thrive. That it would be my fault because I chose the wrong therapy. You can completely twist yourself in knots about that kind of stuff. Every now and then I have a flash that I’m doing the wrong thing but I don’t dwell on it the same way. I have accepted that his disability is out of my control and I just have to do my best and I can’t do anything else. 

How has being Arthur’s parent over the last eleven years changed you?

I see the world completely differently. I didn’t used to think I was a judgmental parent or person but I’ve had every bit of ego stripped away from me as a parent. I realised how little control I had over my life and I think that’s been an incredible experience which I’m grateful that I’ve had. Society was telling me that as a mother, it’s all my fault if he doesn’t thrive. And actually I’ve learned that isn’t true. You don’t have control over everything, and that kind of takes your judgement out of it. I look at families who are struggling now and I see a million reasons why that might be happening. 

I used to be very eco conscious to the point where I never used to drive my car, everything was on foot. The kids were in cloth nappies. Then I realised that a lot of those choices were taken away with Arthur’s disability. Like he only eats one kind yoghurt (one of only four foods he eats) and it’s in a tiny plastic pot. I’ve just got to buy the plastic pots. And now I need to use the car far more, to keep Arthur safe and for us to be able to function as a family. So I’ve had to let go of judgement around how other people make those choices, and that’s been incredible. 

Find Penny on Instagram and Twitter @pennywincer