Primary advice – about advice
I cannot give the advice merely as an autistic adult.
Much of this advice is from years of being an autism parent, my education (both formal and informal) and being on the spectrum (pdd-nos). I cannot parse the three, you know?
I cannot parse it from my childhood experiences either.
I speak from a certain perspective shaped by all these experiences which I am positive people do not entirely share. Obvious right?
The point is:
Everyone with advice speaks from their own perspective so its important to understand it will not fit your situation exactly. (that whole theory of mind thing? I think it’s a human problem) Neither can I ever place myself exactly in your shoes.
The thing to do, if you are feeling open minded is to take the advice that makes sense, even if it seems hard. Forget the rest. Do that with any advice you receive. Believe me. You will receive a ton of it, mostly unsolicited.
With that disclaimer in mind,
and since you’re here and still reading,
here is my advice:
For the parent:
I know when people first receive diagnosis for their child there is an urgency that sets in, if not panic. You want to make everything right again. Funny thing is, nothing was actually wrong. Your child didn’t go from normal to autistic and can’t be changed back to something they never were. They aren’t infected with a virus you can give them medicine for. Their brains have developed quite differently from the norm for whatever reason.
Ignore Curebies/wallet snatchers
Hords of people are going to be trying to sell you something to help make your baby “better” and if you are still in panic mode, your better judgment and money will depart…rapidly.
This might be really hard to accept but there is no CURE. You cannot make your kid un-autistic BUT they can grow and learn.
Forget the Martyr/warrior/saint complex.
You know the one I mean. Parents (mostly moms) give up their personal lives, relationships and common sense to focus on battling the evil autism dragon destroying their/their child’s life.
Don’t go there. If you are there
That dragon is your FEAR.
I get it, I have my own fears and worries about their futures.
Disappointment is a dragon too.
We build mental models of how things will be, and oftentimes they are just fantasy.
ADVOCATE and PARENT
Calm down and THINK.
What is it I need to do to help them grow up to reach their potential?
Take care of yourself
- Eat, sleep, stay active
- Take time for yourself, even if it’s just a little for your own hobbies and interests
- Find respite care. I KNOW from experience this can be difficult.
- If you ever feel like harming yourself or others, TELL SOMEONE.Go to the hospital. Go to a doctor. Call a friend. Do Something! Don’t let it fester.
In order to advocate for your child and teach your child to advocate for themselves, you need to educate yourself first.
- Learn a wide variety of outlooks and therapies and once again, use what make sense for your situation.
- Read the works of adult autistics. Sure there is Temple Grandin. Also please try: Stephen Shore, The Loud Hands project, Lynne Soroya, Karla’s ASD page, etc.
- Learn to understand what makes good/bad research so you can evaluate information. I highly recommend the blog “Left Brain/Right Brain.”
For your kid:
Importance of experiences vs. therapies
One reason special needs kids end up behind their peers is that they spend a great deal of time in therapy instead of having normal kid experiences. It is through our experiences that we form our view of the world.
Sure, therapy, especially speech and OT is essential. However do not let it take up every moment.
Your child needs time to be a kid.
You child NEEDS time to have experiences.
Patrick (6 pdd-nos) and Tessa (4) check out the harbour view
I’m not talking about anything too out there in terms of planning. I mean the park, the zoo, the community, the store, holiday and seasonal celebrations, etc. This is where they will need to be once grown, not in a therapists office.
Your child ALSO needs DOWN TIME in order to develop into an individual and distress. This is just as if not more important than therapy.
Therapy, btw, shouldn’t be about normalization but acquiring skills. Work on academics and self help, skip the forced eye contact and rote social skills. Teach manners. Try having family/social time where social skills/manners can be used/observed in real time. (family dinner, family game night, clubs and activities your child is interested in)
Whatever your child likes to do – run with it.
Let them spend their free time however they like.
(within the boundaries of your family’s values and wallet – of course)
Do not compare your child to other children.
Compare them to themselves-
How are they as compared to last year? Two years ago…
There will always be improvement.
For your family:
Spend time with your spouse/ partner or you will lose them.
Harsh perhaps, but I’ve been there.
If you do, don’t blame that mythical autism dragon. That dragon is named lack of communication and time spent on a relationship.
If you have other children:
There are bound to be things you can’t all do together because your autistic child cannot handle it for whatever reason.
Have a special time for those things.
(a two mile steep climb up a rocky hill so we can sit on a rock ledge, just isn’t going to be a family outing…ever)
Lastly- get to know them, know their challenges and strengths, communication style and personality. In doing so, you’ll better understand whats going to work and what doesn’t, what they do and do not need.