ASD diagnosis for 7YO - Now What?

Hello BPN!  So we have a near seven-year old who is super bright but has had some consistent social difficulties.  We initiated ASD evaluations last year, and finally managed an in-person appointment last week, and received the diagnosis today of high-functioning ASD.  

Of course we thought about this here and there over the years, and we were the ones who sought the evaluation.  But now that there is a diagnosis, I find myself devastated.  I suppose we were hoping that it was just something that would be outgrown.  

My questions are:

  • How do I process this?  How can I get support - are there communities that I can join, for example?
  • We are in a private school that we love.  The school has struggled with some of these antisocial behaviors, but has been broadly supportive and attentive, and we feel that it is a good environment.  We want to stay.  We will certainly discuss this in a more specific and informed way to seek support.  But do we tell the school this label?  Might the school use this as a reason to kick us out?
  • do you tell others, for example, parents of classmates?  Do people think of/treat your child differently as a result of the label?  Is that a good thing or not?

Thank you. 

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I was in a similar position 5 years ago and I can honestly say that now I view my child’s autism as a gift and an opportunity for growth for me and our family!  You should definitely check out the Autism Speaks 100 Day Kit for starters: https://www.autismspeaks.org/tool-kit/100-day-kit-school-age-children

I think there are local support groups on Facebook but I haven’t looked at them.  

I’d also be happy to speak with you!  Our child also attends a private school and it’s been a fantastic choice for us.

Best,

Sarah

I have no personal experience to share, but I want to recommend you follow the Instagram account @the.autisticats

It is run by a few autistic college students who share all kinds of advice, anecdotes, and facts on autism. I started following because I wanted to learn to be more empathetic towards colleagues who I believe are autistic and have much different working styles from my own, and I think the young adults who run the account have such valuable insights for anyone to have a better understanding of how the autistic brain works and how the world can better accommodate and appreciate autistic people. They offer quite a few tips for parenting autistic children.

Best of luck to you!

We have been told since our child was diagnosed: her diagnosis does not make her different than she was yesterday. She's still the same child. For us, her diagnosis was explanatory of traits and tendencies that we had found somewhat baffling. By explaining them, her diagnosis helped us understand and empathize with her better, and to not resent her behaviors because we misinterpreted her as being willfully obstinate. I think talking about the diagnosis is important, because it helps normalize ASD. ASD is a wide spectrum, and more and more people, children and adults, are being diagnosed as being on the high end of that spectrum all the time (and I'm assuming if your child was just diagnosed he's on the high-functioning end of the spectrum). At the same time, we don't broadcast it unnecessarily and reserve talking about it for contexts in which it is helpful (such as with teachers, coaches, summer camps, parents of close friends). Most people are surprised when told my child has ASD, but at the same time they are then more understanding when she says or does something that would seem off in a neurotypical kid. They have more context for her actions. I have never met anyone who treated her in any different way because of the label - but then again we've never been in a situation where someone knew that she had ASD before they knew her (except her special ed teachers at school - but their careers are about kids like mine, so obviously their attitude is the right one). I can't answer about private school. My daughter has an IEP in public school and both before and after her diagnosis her teachers and school administrators have been only helpful. In fact, her second-grade teacher was the one who first pushed us to get her tested because her own child had ASD. And getting her into special ed has been revolutionary. She is devoted to her special ed case manager, who is extremely attentive and constantly keeping us updated about how things are going in the classroom. I would be horrified if your school would kick you out over a disability - but if they would do such a thing I can't imagine that you'd actually want to be there. But to get back to the first point: your child hasn't changed. A label is just a tool, and the purpose of tools is to be useful. Try to put the tool to use by lining up services that can be helpful to you, and understanding your child's behaviors, good and bad alike, a little better. I think in the long run you'll find it really valuable.

It might be really helpful to start with resources such as ASAN. Try to learn from Autistic adults. The term autism has so much unwarranted stigma and bias in our society. It’s sad. But in reality it’s just a different (not worse or lesser) way of being. I think once you become more comfortable with the term and understand it’s not a tragedy (which I know can be so hard!) then it’ll be easier to tell trusted friends and family and your child’s school. Best of luck!

Welcome to the club of parents of ASD kids. You will likely get a lot of replies to your posted questions.

We have a high-functioning ASD son, now 32.  Since our knowledge base is somewhat outdated, we'll leave specific suggestions to others to provide.

To respond to some of your questions:

Yes, join in a community with other special ed parents. There is a parent support group that meets Mondays in a Lutheran church in Lafayette, if you don't find similar families closer.

Private schools vary a lot in their willingness to work with special-needs kids.

If you can manage it, have your family be an excellent asset to your school community.

In practical terms, if the school sees your kid as a disruptive influence in the classroom, they can expel him if they want to. 

Our best year was when there was another kid in our son's class who was worse-behaved than he was.

Depending on what behaviors your child is presenting, consider enrolling him in a social skills group facilitated by a professional.

Be cautious about disclosing your child's disability.  It will not necessarily elicit a compassionate response from parents of neurotypical kids.

Above all, try to nurture one or two friendships between your son and other boys, and do not allow him to be bullied.

We were taught in a weeklong neuropsych evaluation at UCSF, when our son was six, to avoid the "collateral damage" that comes from bullying.  I am so glad that we took that to heart. As an adult, he does fine socially.

Also consider Scouts. The program was very helpful for our son.

Wishing you all the best.

Hi Boston,

I understand how hard it is to receive this diagnosis, and it's important to realize that there will be a period of mourning for what you had hoped for before you come to terms with what  is. But you will get there in time. I decided to be honest with the school, friends and family about our child's ASD diagnosis. Folks likely recognize that something is different about your child, and it's better to get it out in the open. You will find that some people will shy away, but you will also find that others will be drawn closer--and those are the keepers. Private schools don't have to provide services for your child, but public schools do. My child is in a good public school, and the services have been excellent. Take a hard look at public schools and ask around to find out which ones provide good services and a good nurturing environment for special needs kids. Consider moving to the school district that you think provides the best services. Speak up about ASD, and you will find others in your boat...there are lots of people in your boat, and your boat has some advantages that you will eventually come to see.

Oh my gosh hugs my friend! I have 2 daughters aged 10 & 6 with high functioning ASD (we call it being an aspie) and both of my girls are thriving! I remember the initial diagnosis for both girls was part relief, part what now? There are many emotions that come with diagnosis. Books are your friend! I read and researched a lot early on. A good one is A Parent's Guide to High-Functioning Autism Spectrum Disorder, Second Edition: How to Meet the Challenges and Help Your Child Thrive. I would highly suggest getting into public school into a full inclusion program. We attend school in the WCCUSD and there are at least 2 programs that offer this support. Both of my girls have improved tremendously with this support and program! Private schools just do not offer services needed at this point. And this is the time for services while they are still young! My girls have improved so much thanks to school support. We have made a community among certain parents who are and aren't in the program and everyone has been nothing but supportive and helpful. We've even had some families willing to be "guinea pigs" when our girls were young helping their social skills along on playdates with ABA support. In my opinion it is a good thing to share as people are more than happy to help and support. It also is good knowing that when we for example go to a birthday party and my daughter is melting down or not wanting to play, for them to understand and me to not feel ashamed or embarrassed. 

Take care and feel free to reach out if you'd like to chat further...I've been there and still traveling the road! 

debg325 [at] yahoo.com