The hardest thing to manage living with ASD is the differences. Which is quite ironic as ASD is quite firmly entrenched in sameness and routine. Surely everyone who is on the spectrum is the same, they just have it milder, I hear so often. Because of the 'sameness' it is often assumed you know what you are doing, especially if like me you have more than one family member on the spectrum. This is where that deep sigh and sympathetic looks comes in and I answer 'yes, they are all the same' when inside I want to just let everyone know THEY ARE NOT. Each of my children are as different as you and I. The only thing they shared was a diagnosis/label/tag/under an umbrella of.... They all had language disorders BUT they were all different, one has a semantic and pragmatic disorder. This means they have problems using words and understanding the meaning of words. (Today their spoken vocabulary is immense, words I haven't heard of or would know how to use) . Back in the day though I was thankful for photos. Photos of school, home, shops, toys, people in fact anything that he came into touch with. We were able to communicate what was happening, at least in the immediate future. This lessened the trauma of change. Change was another issue in itself. Just going to school via a different road was enough to cause a complete meltdown. I soon learnt that change wasn't always a good thing! Different clothes, different bedding, (we had 3 of the same), shoes not being in the right place, different seasons so different clothing layers. All of these changes were enough to cause distress. Finding solutions was not always easy.
Then the next child could cope with change - to a point, but not with people or language. Their disorder meant they were not able to read another's intentions. Even as an adult, they see things played out in front of them but cannot see when it happens to themselves. This in turn makes for a very vulnerable adult. One fearful day they decided at 3 in the morning - at 13, they would walk 3 miles home. No phone, no-one knowing where they were or what they were doing. Their response "it's ok I knew the way". As a parent these fears are real. It is not just a teenager growing up, it is not molly codling your child and keeping to routine. It is about making life work for them, for you. It is about reducing stress and anxiety too.
As for the last one, they had problems with pronunciation and pragmatics. With therapy, language pronunciation improved, however if you didn't know them they can come across as abrupt and uncaring. They're not, but due to pragmatic language issues it is very difficult to read them at times and they sound blunt. The bonus is they are good at organising, planning and directing their team efficiently at work. That is another misconception, living with ASD does not mean you cannot work or live lives like other people. It means just like anyone else with a difference i.e someone who has loss of sight, you adapt their work or home environment.
Another difference is my daughters had more issues when they became older. Hormones, social situations and peers all had profound implications as they grew. They could no longer hide behind role play or the strategies they had learned at home. They had to stand on their own feet, interact with other teenagers, other social rules and behaviours. A Sea of unknown life suddenly thrust upon them. Navigating teen life can be traumatic at best for anyone, but not understanding social rules, not being able to read between the lines, needing fixed routines but having to try and 'be normal' can be catastrophic for someone with ASD. Cue counselling! A safe and harmonious place or them to go - or their parents. Somewhere to allow them to be 'me'.
The counselling environment is a safe place, calming and routine. It is non judgemental and there are no pressures on what to do or say. For the person with ASD it allows them to look at themselves and how they manage things, they can then make their own rules, that can fit with societies expectations. They are able to see and be comfortable with their differences, and have chance to navigate the outside world their way, thereby reducing the anxiety and stress levels. Which cause added pressure, depression or suicidal or self harm thoughts and behaviours. Suicidal thoughts in people with ASD in the UK is around 66%, with neuro-typical people it is around 17% (The Lancet, 2017). Quite an eye opener. By utilising counselling it helps to manage these overwhelming thoughts. Getting to the next day for anyone who is suicidal is a huge step forward.
For family members living or supporting family with ASD the pressure and anxiety can be huge. Managing fixed routines, not being able to do spur of the moment things are a struggle. The family as a whole have to adapt to preserve everyone in the group. Living with a partner with ASD can also be a minefield. As an adult their 'differences' to the outside world diminish, but at home they can present as bullying, arrogance, non-caring. Yet you know they are not. You have amazing days just like anyone else, but the bad days are exhausting. Sometimes conversations go round and round until you find the right words to say for them to understand. Imagine how mentally exhausting a 3 hour conversation is, going over and over and over the same thing. Then suddenly poof, you hit the right combination of words and all is well. Utilising counselling gives the family or partner a space to just not...... No explaining, no thinking if necessary. A time for them to look at their feelings and emotions. Re building their strength and resilience, dissipating their stress and anxiety.
Yes people with ASD live lives like the rest of us, at times, BUT the differences in communication, emotions and routine has a deep impact for everyone around. If any of this resonates with you, if you are living with ASD or with someone who is on the spectrum and would like help, call 07305 676680 where I can help you through your journey. Couples, families or individuals.