I only had one of my children with me tonight for a simple trip to the store for bread. My pulse was racing, my eyes darting about and my body sweating... all before I had even got him out the car! My son has autism. He does not respond to his name, has no awareness of danger and experiences sensory overload. He is unable to speak. Taking him out of the safety of our own home is dangerous, difficult and demanding! He happens to have a twin sister who also has autism p, and despite the fact I am a confident, independent person I really struggle to leave the house with my own children.
Thousands of parents throughout the country are in the same position.
Can you imagine what it must be like to not be able to leave the house with your own children?
Here are the six top reasons people gave me for feeling unable to go out with their child or children with autism:
1. Refusal.
Angela from Lerwick put it like this: "At the moment I'm struggling to get my 3 year old out of the bedroom let alone anywhere else. He's been in the room for 3 days now..."
Lisa from Hartlepool told me, "(my child with autism) won't walk far before lying on the ground and refusing to move.."
Another mum wanted to remain anonymous but told me, "I sometimes have to wrestle him just to get him in and out the car."
2. No sense of danger
Susan from Leamington Spa said, "I have three kids, two with autism, all going in different directions with no sense of danger!"
Katie from Leeds agrees, "My ASD child needs my full attention and I need to be running after her etc., for her own safety constantly."
Danielle, also from Leeds told me, "I struggle at times because I have to risk assess every place we go..."
Michelle, from Lanarkshire in Scotland has a similar problem: "I struggle sometimes with my eldest (8) who has ADHD. She rushes everywhere and often runs off."
3. Aggressive or violent behavior
Vicki, from London put it like this,"I find it hard to take Sophie out due to her anxiety and behavior. She lashes out, screams, hums, kicks and generally anything she can to make our time out together pretty stressful."
Some parents are so upset at their child's behaviour they wanted to remain anonymous. One told me: "I struggle as he is getting bigger and stronger his behaviour is getting worse and more violent. He attacks me as well when i drive. I am frightened sometimes and also the way people stare at you as well makes me feel uncomfortable as though I'm a terrible mother."
Shirley, from Glasgow said, "Every outing is a struggle with Blake... his mood swings..his impulsiveness and his temper... I don't stress about it any longer and I just deal with the situations as they arise and if possible avoid certain situations too."
4. Sensory issues
One mum shared with me,"My 3 year old needs headphones and music nowadays because he's become so sensitive to the outside its all too much for him."
Another, "(my son) has such sensory issues he can't walk and so I have to carry or push him in his special needs buggy."
Sarah from Warwickshire shared with me about her daughter, "She suffers anxiety and freezes and shuts down when over whelmed."
Nadia from Oxford has a pre school child with autism and told me,"My nearly 4 year old son struggles to be anywhere busy/noisy."
Melanie, who lives in London shared, "I have two children with autism, I struggle to get my six year old out at all, we use ear defenders but she will still ask to go home."
Stacey from Glasgow know this too, " I over think when taking zack out and about especially alone because when we go places his sensory issues become x10 and he gets obsessive over silly little things and his climbing is wild people look at me like I don't know what I'm doing with an out of control toddler -- if I did every little thing expected of me and him from others we may as well never leave the house."
5. Having siblings as well as a child or children with autism
Sonya, from Norfolk is really struggling, "I have a 9yr old child with autism and a 7 year old being assessed for ASD/ADHD and a crazy two year old. I won't take all three out because it's not safe and once my eldest has a meltdown he takes all my attention leaving the other two vulnerable."
Victoria, from Leeds, and mum to twins said, "I find it very hard as both children want or need my attention. For Joe to enjoy outings I need to put a lot of effort into encouraging him to take notice and prompt him. But his twin sister equally deserves my attention and excitement too! Neither child understands that and I feel we rush the outing and miss out on things that we would have enjoyed. For me I could do with a helping hand and taking it in turns with each child."
Katie, also from Leeds, completely agrees, "Yes it is impossible. I have 2 children, 5 year old asd and adhd and a 2 year old. My ASD child needs my full attention and I need to be running after her etc for her own safety constantly, which would leave my 2 year old alone and unable to keep up and I can't carry her and run after my oldest. So completely impossible."
6. Public comments and stares
Jess, from Nuneaton, told me some of her experience, "Its not really the behavior that i struggle with though... it's more all the people around me. A lot of times I get people tutting or telling me to calm him down. He's a tall boy too and we got a lot of comments about him being in a stroller. And of course im just "giving in to him" when i give him my phone as a distraction tool."
Another carer, who wanted me to keep her identity hidden told me, "When I take him out, I'm not in control of the situation and it panics me. He will not listen to me, run off, or stim either by flapping or humming. I feel like everyone is looking at me, judging us both."
Shelley, from Somerset, says, "I struggle with the looks, tuts and opinions of others when my son is finding it hard being out. I accept how to deal with him when he's having a meltdown, it's not easy but it's what we are faced with, it's the judgement of others I find hard."
Wendy from the South East coast said it caused problems on her recent holiday, "I have 3 children with autism . I get fed up with the looks the tuts. We had to cancel our camping holiday when they found out the kids had autism."
Linsey from Lanarkshire concludes with, "the way people stare at you as well makes me feel uncomfortable as though I'm a terrible mother."
Going out with your own children is something most families take for granted.
So how does this impact families faced with autism?
"Everyday I find myself more housebound" one carer said.
"I rarely go anywhere with them both on my own", Kirsty, Leeds
"Over the past couple of years it has sometimes been made so difficult that we are housebound unless someone is with us." Kayleigh, Shropshire
"Everything needs to be planned to the minutest detail", Sarah, Warwickshire
"Everyday it's easier to find an excuse to stay at home." Anon.
This summer please remember the families of children with autism who for various reasons feel they can not leave the house with their own children.
I am one of them.