My husband and I have been very lucky with our family – they are lovely, accepting, supportive people. As soon as Michael was diagnosed they dropped everything and ran to the rescue. They kept asking me what they can do to help but there really wasn’t much at the time – all we really wanted in those first six months was for people to leave us alone with our books and our son, and let us do our therapy.
If you are a family member or friend of an autism parent, and really want to help (thank you, you are awesome!) here is a list of things to do or not do. I’ve found that the ‘not do’ list is at least as important, if not more so, than the ‘do’ list, so please pay extra attention to it!
Tell us about any great changes you see in our children since the last time you’ve seen them
Ask us lots of questions. We love talking about our kids! It makes us realize how far they have come. We might remember that yes, he was having trouble with ‘wheels on the bus’ six months ago, wow, he’s fantastic at it now. It makes slugging it out at therapy all day every day that much easier, and might even be interesting for you.
Take our word for it. We know that what we tell you makes no sense. It makes no sense to us either. But we’ve worked our truths out with hours of very painful experience.
Read as much as you can. Try to find good, reliable sources of information rather than conspiracy websites or your aunt’s cousin twice removed. (Here are some good resources)
Do exactly what the parents tell you to do. To the letter. It doesn’t matter if you’ve raised 12 kids and 6753 grandkids – unless some of them had autism and improved successfully, you do not know more about our child than we do. If the parents tell you he is scared of butterflies and must be in his cot going down for his nap at 12:53pm then he should be in there at that time on the dot. And do not force him to spend time with butterflies because you’re sure he just needs a firm hand.
Help us with therapy if you can. A child on the spectrum needs many hours of therapy per week. I have known children that get 50-60 hours, and the minimum recommended amount is 25 hours per week. This doesn’t mean you have to do the therapy. In fact it is tough to do it yourself, especially if you are older. But driving them to therapy or back, helping to generalize skills they have already learned, buying the 1500 toys they need or looking out for foods we can use as rewards are all useful.
Come visit us at our house. We may not be able to bring the little one over to you as much as you would like, as he/she is always in therapy, but we are very happy to see you. Oh and bring dinner.
Take our other kids to interesting places. Odds are they have spent way too much time in the house driving us up the wall and we feel guilty they are missing out on normal kid activities.
Help us hire junior therapists. They are more valuable and more rare than white lion cubs and we need help finding and training these exotic beings.
Keep inviting us to things. We will miss many events – family events, evenings out, may all be practically non-existent for us. But we like to think we’re still included and one day we might actually have a baby sitter and be able to go out!
Try to develop a relationship with our little one. (This is how to develop a great relationship with an autistic toddler). We are much more likely to call you to babysit or for help if we know they are happy with you.
Speak to our little one simply, using one or two words at a time (unless we tell you otherwise, this one will vary with the understanding level of the child). They may not be able to understand you, even if you are sure they do. Be very careful not to ask questions as these are the hardest to understand, or to inundate them with instructions that you keep repeating over and over. This can be very distressing, or at best will be completely ignored.
Play with our kids at their level. Ask us what that level is, don’t just assume you know. The rewards can be amazing.
Help us with housework. Bring food. Do our laundry. We spend hours every week on making flashcards, printing out programs, and organising therapists. Just overseeing therapy and doing admin is a full time job.
Have extra patience around us. We will do and say stupid things. Sleep deprivation and constant stress will do that. No Aunt Mirabelle, you are not a nosy old busybody who should just leave us alone. We love you. Just take it easy on us for a while.
Do not give unsolicited advice, whether or not you have raised 600 kids, unless at least one of the kids you raised yourself had autism.
Never tell us that everyone goes through it. If you tell me that it’s normal and everyone goes through it, you make me feel like crap because I feel like I’m dealing very, very badly with something that everyone else goes through just fine. Also, everyone does not go through it (this is why autism parenting is different)
Do not tell us about your cousin twice removed that started talking at four. I don’t care. My care factor is high when it comes to my child, and is extremely low when it comes to any cousins twice removed. I don’t see why the fact that your cousin couldn’t get his needs met until he was four, and had parents that couldn’t be bothered taking him to speech therapy, is relevant to me. Why should the fact that some other poor kid was unhappy for a few years supposed to make me feel better?
Don’t push your theories on us. Suggestions might be welcome, but make them once and then stop. Never keep going once we said no. Trust me, we have read the theories. We have considered the camel milk, and the diet, and taking him out to playgroup more. If we aren’t doing it, it’s a conscious decision.
Don’t get offended if you don’t see us or our baby very much. In the early years, the more time we spend on early intervention, the better life will be later. Therapy is not a lifestyle choice, it is a necessity.
Don’t offer to babysit unless you are prepared for a serious commitment. We will be completely all over the place and will change around on you (possibly because our little one was up for three hours at night and our whole timetable is in constant disarray). You will not be able to change around on us at all. We know it’s unfair. But we can only leave our little one with someone that sees them at least a few times a week, who has been there all day with us present and knows their entire routine, and who is super reliable even if we are not.
Don’t try to force our kids to behave ‘appropriately’. We are working on it, but if you make them do things they don’t like, or possibly can’t do, without the appropriate training all you will do is ruin your relationship with them. Unless you are a trained therapist you should not be attempting therapy on your own.
It is true that friends and family go on the back burner for a few years during early intervention. Friends and family can either be a source of stress and pressure, or a lot of help and comfort.
As an autism parent, are there any other ways that you would like to be supported?