A very little page about Autism

My son is severely autistic and I wanted to share some of our experiences and things that we've found useful.

We were very lucky with our son in that we found out quite early on in his life that he was autistic - he was just 2 when diagnosed. Early diagnosis of autism can make such a difference to families - giving them the option of starting therapies and interventions early on in their child's life, begin to adapt family life to the challenges and helping them avoid years of anguish and uncertainty.

Autism now affects 1 in 150 children and this year more children will be diagnosed with autism than with diabetes, cancer, & AIDS combined.

So what is it?

Autism is a 'spectrum' disorder which just means it affects each individual differently. Some children have a mild form and are able to speak, enjoy company and attend a mainstream school with a little extra support. Others are extreme and are withdrawn from the world, unable to speak or communicate with those that love them. Autism is a lifelong condition.

There are 3 key things that are common across the whole spectrum:

difficulty with social communication - some children have no speech at all, some can only echo speech they've heard, some understand and use speech well but are extremely literal - 'I laughed my head off' would be a confusing comment for them to interpret.

difficulty with social interaction - autistic people can find it very hard to form relationships and may lack awareness of what is viewed as appropriate behaviour - for instance personal space, touching strangers etc

difficulty with social imagination - an inability to understand what another person is thinking or feeling

Other autistic traits include:

Repetitive behaviours

For instance repeatedly watching the same video over and over for years or repeatedly lining up objects. For the last 3 years my son's only toy has been duplo lego and he will build a tower of 5 blocks, take it apart again and rebuild - repeating this action without a break for several hours at a time.

Many autistic people are extremely stressed by changes in routine. 

Sensory sensitivity

This can affect any of the 5 senses either by intensifying them (hypersensitivity) or by making them under-sensitive (hypo-sensitivity). Loud, sudden or particularly pitched noises can be unbearable. Clothing textures can also be a problem and many autistic children repeatedly strip off. I've found removing all clothing labels or wearing T shirts, pants and vests inside out helps Toby keep some of his clothes on.

Many children with autism seek stimulation by rocking, hand flapping, flicking objects etc. Toby gets very excited by fast movement - such as cars along a busy road, rolling credits at the end of a film and will squeal and jump with delight. He also does a lot of head rocking.

An uncommon reaction to pain is also a factor, again either intensified or under-sensitive.

Poor sleep patterns

Difficulty going to sleep, frequent waking etc

Unusual eating behaviour

eating non-foods (shampoo, dirt, toothpaste etc), or only foods of one colour / shape, and extreme food fads are common.

Self harming

Hand biting and head banging against a wall are probably the most common. These are obviously extremely distressing for a parent to watch.

Some links:

As a parent looking for help the internet is a great resource. It does however give access to a huge and bewildering array of information and it is enormously time consuming to plough through it all. There are dietary interventions, behavioural therapies, communication strategies, research programmes and countless other avenues to investigate and interpret. Deciding where to start can be overwhelming.

I thought I'd share a couple of the UK sites that I've found useful through the last 5 years - it's no where near a comprehensive list and since every child with autism is different it's not going to cover much that everyone may need, but it's a start and I will try to keep adding to it.

If you have a child with autism I wish you strength and courage - it's not any easy journey but you are not alone. My best advice is to seek out other parents of autistic children. They will know exactly what you are going through and even if they have no solution just sharing your experiences will help enormously. I've found this video of other mums sharing their stories really helpful - it just reminds me I'm not the only one going through this and helps me keep going.

A few resources in the UK:

The National Autistic Society usually a first point of call with a very comprehensive list of information and links etc. There's a full overview of information on autism for parents and carers, a database of relevant services, information on the latest research and a lot, lot more.

PECs - We introduced this Picture Exchange Communication method when Toby was just 2 and it has given him the ability to 'tell' us a little of what he wants and needs. I believe it has helped him enormously and relieved a lot of the tantrums and melt downs caused by frustration. There are other ways of introducing communication (Makaton / signing) but this visual method seems particularly useful for children with autism and is universally understandable.

Autism Forum - a place to 'meet' other parents / carers

Thames Valley Adventure Play area

It's hard to take an autistic child out in public and do 'normal' kid stuff as often understanding and tolerance are not forthcoming from others. People can be judgemental about the strange behaviours, tantrums and noises that autistic children often display. As a parent you do your best to ignore the stares and comments but they do sap your confidence and strength in taking your child out anywhere. The best thing about dedicated special need play areas is that everyone understands and that you don't feel different as a family.

The Thomas Centre.

A great place for a holiday. The Thomas Centre in Lincolnshire, UK is a new contemporary barn development which provides 4 and 5 star luxury, self-catering holiday accommodation for families with communication impaired children and adults. Facilities include a pool, trampoline, indoor and outdoor play areas and it seems especially good as it's small scale and everyone staying there is dealing with similar issues.

If you have a link that you think might be useful for other parents please email me. Thanks for reading.

Comments

[Martine]

Thanks for this page Julie! I recognize a lot as you well know;-) My son likes to eat everything apart. First meat, then potatoes, and finally vegetables;-) It took us a very long time to learn him eat hot meals.

[Abby]

Thank you so much for making this page. I want to be a nurse, and I like learning about things other people go through so that I can be more understanding when I encounter them. Have a great day!

[sara (sarloz)]

i work in a aba school for children with serve spectrum disorders most of whom are non-verbal and the pecs books are our main form of communication with the kids. the school uses other devices but the first go to is the pec book and i love them. the kids i work with are incredible at using them, they really do make a difference

[kerry]

I think you have summed it up better than any other website I have seen.

I have 4 children and 2 of them are on the autistic spectrum. One has 'classic' autism and the other has aspergers. They are both pretty mild in comparison to some cases and they both have speech. I sometimes wish they would be a bit less vocal lol. My youngest screams at high pitch yet has hearing sensitivity. An ambulance set it's siren off just as it was going past us the other day and freaking out doesn't even begin to describe it.

When my 10 year old was diagnosed he was 9 and the support was pretty much rubbish for his age group. Infact it was nonexistent. In complete comparison my 5 year old was diagnosed a couple of weeks ago with aspergers and we were immediately given details of all sorts of support groups because he is younger.

There are a number of groups on Facebook saying they have a cure. Well what a load of rubbish. There is no cure and the only way things can get better are if you learn how to deal with situations as they arise. They will have it lifelong but they and us can learn to deal with things in different ways to overcome difficulties.

It is nice to know we are not alone although sometimes it feels like it.

[jane]

Hi, Julie..I would like to refer you to www.utexas.edu. Just click on the banner at the top to read about this research. Greg happens to be a friend of my son, but I had no idea that he was "somebody" or what he was doing! This is fascinating work. I think of you all often..and Rose Bunny says, "Hello"!

[Denise]

My son is autistic and it's both heartbreaking and heartening to read about others in this situation - especially when you describe something I can recognize all too well. Thank you for putting this all together...

[SarahMc]

You summed up ASD perfectly! My 3 year old has ASD and we are lucky that he is mild, but saying that everyday is a challenge, I often wonder wether we wil find our way out of the trees, let alone the the woods!
Love you bunnies, I am an avid quilter but your beautifull bunnies have made me think about having a go at knitting. Keep up your gorgeous blog.

[Caroline Flatt]

Hi Julie and everyone one else in the uk with special needs children I can recommend the internet support group http://www.specialkidsintheuk.org/

Hope it is of use to you all.

[Annie]

What a great page you've put together on Autism. It is part of our life too, and the road is not always smooth. Good luck with your continuing journey

[Donna Zeches]

Hi Julie,
How can I purchase one of your Bunny Girls?

Thanks Donna

[Karnak]

Hi Julie
If the 6 weeks holidays get too stressful for you and Toby, do consider respite. My eldest girl is at the very severe end of the autism spectrum and we began to put her into respite at about age 6 or 7 as we realized we were in for a very long haul. With Toby in respite you and Amy can go and do things together at places you find impossible to take Toby. Our local government provides overnight respite and a weekend break or a week as she got older was a godsend for us as a family, I doubt if we would have coped with her without it. She is now 20 and in a group home and I have forgotten how stressful life can be with a mentally disabled autistic child.

Karnak a fellow traveler

[Daniel Allison]

Hello Julie,

I'm not sure if you've ever heard of the RDI (Relationship Development Intervention) program before or not, but we've been using it with our autistic son in Canada with amazing results. The program was created by Dr. Stephen Gutstein and is based on the natural development process. As such, it's incredibly effective for treating ASD and PDD.

https://www.rdiconnect.com/

Good luck to you and yours!

[Bim]

I am a lucky ducky mummy of two beautiful 'auties'. My girl is 9 and is scrumptuous, naive, extremely vulnerable, and is able to attend a mainstream private Christian school, fulltime. My boy is 6, very cute, talkative and extremely intelligent but cannot attend mainstream school despite having attempted 2 in less than 18 months. He was in public school because the private one opted not to take him on (they are allowed to do that, but a public school also refused him and they are not allowed to do that). I am now homeschooling him and he is much happier, less challenging and learning to his ability at his pace. I have never wanted my children to be anything other than what they are, despite the utter exhaustion I have experienced in trying to apply for services and funding to better meet their needs, and trying to get teachers etc to see the world through the eyes of autism. These 2 beautifuls have a valid place in the world merely because they are what they are; different. Yes, they are high functioning, but they lack independent living skills, cannot adapt well to other situations or people, and are sensory challenged on a daily basis. My son is constantly misread because of his high IQ, yet he scores as more severe on an autism rating scale than his sister who has more obvious deficits. I think that he scores differently because he talks well (but is extremely pragmatic) and we have greater insight into his world than his sister's who has a severe language disorder (but talks). Both know that they have autism, and this makes them both glad and sad. Each have friends who are in the spectrum, and it is wonderful to see how easily they get along with children who are painted with the same angel dust. Neuro-typical children often make derogatory comments ('retard' being the most popular one attributed to my boy) and this makes them sad and feel powerless. Shopkeepers give us grief too, particularly old ladies in thrift shops and those waiting in line at the supermarket. I am tired but feel complete joy in my motherhood. I have never felt 'cursed' but often challlenged! My children tell me every day that they love me because they feel the love and joy I have inside me.

[Kay]

Dear Julie, and any other mums out there that can offer advice,

My son (aged 7) and I have been invited to spend the day with some new friends and their autistic daughter. We'd like to take a little gift for their daughter and could do with some advice. She is 5 years old. And, whilst my first thought is that we behave entirely as normal (it wouldn't occur to my son to do otherwise I'm delighted to say) do you have any tips as to what we can do, or not do, to make the day as happy as possible for everyone?

[Bren Allen]

May the blessings of our God fall upon your shoulders, scatter at your feet, and enfold you with His love!

[liz]

http://www.fraxa.org/
i hope you find this helpful...there is hope at the end.
Liz

[Katie]

Hi Julie and thanks for sharing your story. My son is on the spectrum and at 4 and a half he is making excellent progress with speech which is his major hurdle. We live in Australia and are very keen to make contact with any other Australian families who have made the move to the UK due to the exellent council and educational services available to kids with ADS. Do you know of any such families? We're keen to hear about their experiences and whether the big move has been worthwhile for them and their kids.

Keep up the beautiful knitting!
Cheers, Katie