Jo Griffin of www.affinityhub.uk and Felicity Rosslyn discuss how parents can best support their child on the autism spectrum

1. JG: How parents receive a diagnosis for their child is key. Parents sometimes report feeling left high and dry with no idea of what to do next. What advice would you give parents in the early days?

FR: While for some parents the diagnosis can feel devastating for many the diagnosis is not so much a surprise as a relief—they’ve always known the child is ‘different’ and they’ve suffered from being blamed for their child’s ‘bad behaviour’ for a long time.

But the questions remain, what to do next when the agreed diagnosis is an Autistic Spectrum Disorder (ASD. I strongly recommend the autism.org.uk website as a central hub for information and contacts.

The child needs to ‘find their tribe’, whether in school or on the internet – and so do the parents.

2. JG: It can feel very de-skilling, as a parent, to not understand your child or know what they need. How do you support parents who are feeling like this?

FR: I tell them that understanding autism from the inside is a bit like a journey abroad.

You have to face the fact that you don’t understand the language or the customs very well, and that the foreigners are busy about their business and won’t take time to explain anything.

At the same time, exploring somewhere new and different can be interesting and exciting and you’ll gain all sorts of new skills and experiences along the way.

In communicating with someone on the spectrum it is wise to be cautious about hidden assumptions, yours and theirs, and to focus on information rather than feelings.

There is a ‘guide for visitors’ by a 13-year old boy, Freaks, Geeks and Asperger Syndrome (Luke Jackson) which is revelatory about not only the difficulties of his ASD experience, but the joys.

It taught me a lot. He has subsequently written a book about ASD adolescence.

3. JG: In my own experience, society and the reaction of others can make, or break, my day (i.e. if my son is displaying signs of sensory overload in public). Do you have any tips on how parents can manage this and support their own emotional well-being in the fallout?

FR: I think public awareness has moved on to the point where you can say ‘my child is autistic’ and be understood.

Obviously, the negativity may still be there, but you can take pride in standing up for your child and know that there’s an increasing body of opinion on your side (which has led to innovations like ‘quiet shopping’ hours and autism-friendly cinema).

The National Autistic Society’s website has short and powerful films representing autistic feelings from the inside (‘Too Much Information’) which could help you understand why overload will lead to meltdowns.

Above all, you need friends who are in the same boat!

Look out for local self-help groups, go online, and reach out to other parents whose children show the same behaviour.

Your child may already have found a friend at school who they recognise – that child’s family may become your support network.

4. JG: Parenting and childhood are often idealised in the Western world and of course the reality, for many parents, often falls short of these dreams. Images that we receive from adverts, TV and social media rarely tell the whole story of people’s reality. Psychologists talk of cognitive dissonance, the gap between the ideal and the real and the larger the gap the more someone can feel a sense of dissatisfaction or that they have in some way failed.  Are there strategies that parents can use to adjust their expectations to something more realistic?

FR: I think children on the spectrum can be a total antidote to the idealisation of childhood – and that is what I have learned to enjoy about them.

They are factual, truth-telling and direct.

They make us question our ‘normal’ because from their point of view social behaviour is a charade and not worth the effort.

They can be very funny, both accidentally and deliberately, because they see so much absurdity around them – and that can be a gift to those of us who take life too seriously and forget to live in the here and now.

Of course, there is a huge spectrum of abilities and challenges, as well as individual hopes and expectations for parents.

Taking care of yourself while finding your feet in your new situation is an important part of the process.

5. JG: What messages would you pass onto parents about the future with their child?

FR: I think ASD is best viewed as developmental delay, sometimes in learning, and always in social understanding.

As a rough guide, I get parents to halve their child’s age to get a sense of their social abilities, so an 8-year-old would be 4 in terms of self-control and awareness of others, and a 16-year-old would only be 8, a 20-year-old only 10, and so on.

The message I want to convey is that progress is always being made, but if you compare your child to their peer group you will frighten yourself and pile extra pressure on the child themselves.

The proper comparison is with other children on the spectrum, and with the child’s previous achievements: all glimpses of improvement are to be celebrated.

There’s a new book ‘Been There, Done That, Try This!’ written by mature people on the spectrum for younger ones, where you can eavesdrop on how grownups look back on their years of slow development and see how far they eventually travel.

The difference between these (often very successful) adults and your child is the intervening years of experience.

These adults remember how they learned that other people had feelings, and what to do about it.

They remember learning how to modify their language and tone of voice when socialising. They remember learning to limit the amount of time spent talking about their latest enthusiasm, and how to capitalise on their specialisms when it came to getting employed.

They have done all this so successfully that many of them pass for neurotypical, and they are the only people who know how hard they have worked to get there.

One other side benefit of thinking about the timeline of ASD development is that it throws new light on the behaviour of other members of the family.

The diagnosis of a child is often the trigger for recognising ASD in parents and grandparents also – and the fact that they have survived and lived full lives without diagnosis is all the evidence we need that developmental delay is not final.

Jo Griffin is a Chartered Counselling Psychologist and Founder of www.affinityhub.uk which signposts parents of disabled children to emotional support.

Felicity Rosslyn is a family counsellor with a special interest in autism. Her website is http://www.leicesterfamilytherapy.co.uk

Sometimes there are things in our life we would like to change, but cannot.

I guess then we have a choice: bang our head against a wall that will not move, or change how we respond to the wall.

I tried to keep this in mind recently when my son was ill for the fourth time this winter.

Despite medicine, multivitamins, good sleep and a healthy diet he has a weakened immune system and prone to respiratory infections.

I have railed, I have cried for him (and me); seeing him struggle and the consequences of numerous illnesses.

But it is our family’s reality and I don’t want it to emotionally wear us down anymore.

Giving myself more space and allowance to change my work so that I can care for him on the days he’s ill, we now try to make it a special day at home.

We enjoy snuggling on the sofa watching his favourite movie.

I get to catch up on some phone calls or housework rather than running around trying to complete all the other activities on my to do list, accepting that they will have to be done another day.

Realistically acknowledging what is possible with the time and resources we have.

All simple strategies that have meant I look at the situation in a slightly different light rather than getting frustrated, and upset, at something that is beyond our control.

Putting things into perspective

Having children can make us reassess what is important in life. This may be even more so when we have a disabled child.

I am much more aware of difference now, and the importance of inclusivity and justice.

It forces us to reconnect with our core values and meaning in life.

At times this may be at odds with society’s expectations; self-image, a wonderful career, managing everything with aplomb.  We realise what is really important to us; there is no point in sweating the small stuff.

Staying in touch with our values is an ongoing process but we get a sense when we’re not travelling the right path for us.

In the field of positive psychology there is an exercise where people find three good things that happened during their day.

This can help us to reconnect with the positives particularly at a time when the negatives seem overwhelming.

Change and acceptance

For some people, trying to change the way they approach things helps (i.e. looking at a difficult situation as a challenge rather than a threat), whereas others find this hard to do consistently.

An alternative is Acceptance and Commitment Therapy which involves developing greater awareness of what we are feeling, particularly at times of pain and distress.

Rather than trying to escape from the difficult feelings, it is about opening up and allowing them to ‘flow through’.

This doesn’t mean giving up or being defeated.

It comprises a stepping back – ‘I notice that  I’m having the thought that X’ – and observing negative thoughts as just thoughts rather than facts.

There are workbooks at http://thehappinesstrap.com/free-resources/ which can be helpful in realising what is important in our lives.

It is a work in progress as everyday life can be draining and the modern world can drag us down paths we don’t want to be on and pressures we don’t want to experience.

But for every new day I take a deep breath, try to see things in a new light, appreciate the little things, and feel a little bit more control enter back into my life.

There is a particularly dark place you have to go to as a parent when you fill in the Disability Living Allowance form on behalf of your child.

While completing it recently I reflected on how unusual it was to focus purely on the negatives about what my son cannot do as normally, both at his special school and inclusive leisure activities, we celebrate all the things he can do, or at least the skills he is starting to develop.

The idea of not only concentrating on the negatives but trying to quantify them – just exactly how many times do I remind him to do things in a day? – feels unnatural, intrusive and potentially upsetting.

If I let it.

And I guess that’s what I started to think…do I let this spoil my day, or do I see it for what it is.

Jumping through the hoops so that we can have some extra resources to do the things we enjoy together as a family.

If it’s easier to get a taxi back from a fun, but very tiring day, and avoid a potential meltdown-inducing journey home, then thank you DLA.

If I see that yet again his shoes have worn down way more on the left side than right because of his asymmetrical gait then I will get the extra pair of shoes even though his feet haven’t grown.

Thank you DLA.

Helping towards our electricity and gas bills because of the extra washing and heating.

Thank you DLA.

If I have to pay extra to top up the Short Breaks activities he really enjoys then I will.

Thank you DLA.

The little things that make life a little more bearable, a little less stressful.

This is what DLA is for.

So leap over the hurdles, go to the dark place while filling out the form. But take it in short bursts, acknowledge that it can be painful but come out the other side and make sure you do something nurturing for yourself and positive with your child.

And if you get your DLA payments, enjoy them and use them, without guilt, to make life a little easier.

You both deserve it.