Just got the dreaded Autism diagnosis, where to start?
August 8, 2014 9:14 AM   Subscribe

My two and half old son got diagnosed with autism yesterday. I am obviously freaking out. Where do I start?

I always knew my child was a little different since he's pretty calm and easygoing and everyone says he's "so cute", but he's not very social in that he plays alone a lot and doesn't respond to his name or follow orders well. He's also not talking yet. We started him on therapy a few months ago and the therapist *almost* assured us she didn't think it was autism. The therapy's helped a lot, but we saw a neurologist on my pediatrician's suggestion and the neurologist said a bunch of stuff, mostly going around the "A" word, but here we are anyway.

I'm not in the US so I'm not looking for any location-based resources, but I need to educate myself (books? websites?) and maybe start looking for resources of what can be done at home to help my little one get a jump start on this and maybe have the best prognosis we can help him get.

Any words of support also welcome, this has already been a hell of a year for me and my family....and now this.
posted by anonymous to Health & Fitness (21 answers total) 5 users marked this as a favorite
Think of this way. Now that you know what it is, you can start addressing it. He's still the boy you love, your child. Nothing changed about him or you. It's just today you know how he's different than the neurotypical and you can work with professionals now to help him in his life. And, in my book, that's a good thing.
posted by inturnaround at 9:25 AM on August 8, 2014 [5 favorites]

In this thread, there are a number of thoughtful comments (especially dorque's) regarding "what's next" type stuff for a child who doesn't have a diagnosis but is presenting autism symptoms. Maybe they will be of help to you?

The fact that you are caring and attentive enough to do what it's taken to get this diagnosis for your little one at such a young age speaks wonders for how lucky he is to have such a loving family. You'll do great!
posted by sparklemotion at 9:26 AM on August 8, 2014

Far From the Tree - the whole thing, not just the chapter on autism. Not so much for concrete advice on what to do or not to do, but because it shows that even less expected paths are meaningful and fulfilling, albeit in surprising ways. I don't even have children and it changed the way I see other people and the world.
posted by sallybrown at 9:27 AM on August 8, 2014 [5 favorites]

OK, here's a quick word of support. Autism is especially treatable when it is diagnosed at a young age. And loving attentive parents are absolutely the best people to get that for their kids. Also, autistic people often function at a very, very high level. This is good information to have and work from, not a reason to feel K.O.'d by fate.

And, an internet hug to you as you gather your strength and wits together in this constructive effort to figure out what to do for your son.
posted by bearwife at 9:29 AM on August 8, 2014 [3 favorites]

First off, I just want to tell you that the child you had when you walked into the evaluation process is the same person who you love right now. The only difference is that you have a more defined model to help understand some things about him and how he ticks that you may not have had before. You don't need to dread autism. There are some associated challenges, but there are also joys and learning and all the wonderful things that come from being a parent and for him, from being a person. The lens might be a little different, but you will be able to have a a very special relationship with one another and your son is going to find pleasures, relationships and meaning in his life.

Austim Speaks is a bit problematic as an organization for reasons that are complicated. That being said, they do have a very helpful set of Toolkits for families of children on the autism spectrum. The First 100 Days kit is a really nice resource walking you through the things you can start to do right now.

I work with children on the spectrum, and they are far and away some of my very favorite people in the world. I'd be happy to try to help point you to resources if that would be helpful.
posted by goggie at 9:39 AM on August 8, 2014 [3 favorites]

I'm touched to be called thoughtful! I don't know if that whole comment will be relevant to you, but the important part of the message is it's ok. It's ok if your son is autistic. It's also ok to be freaked out initially; this changes your parenting challenges, but it doesn't mean your son is any less wonderful.

Some thoughts that might help as you get to grips with this: please stay away from Autism Speaks. They're very vocal right now, but they are terrible advocates and mostly make people unjustifiably frightened. The Autism Self-Advocacy Network is much better. It's mainly US-based, but here is a list of their chapters, including their international affliates, in case that helps you find someone in your area. I also like the Thinking Person's Guide to Autism; they have an extensive list of books and other resources.

Autism runs in my family; I'm capital-A Autistic (by analogy with capital-D Deaf, I consider it an intrinsic and critical part of my identity), and I have one confirmed and two suspected autistic close relatives.

Please feel free to memail me if you need to chat.
posted by dorque at 9:41 AM on August 8, 2014 [9 favorites]

I used to work in autism research - am by no means an autism expert, other than being trained to do some of the diagnostic tests, so take this with a grain of salt. But here are a couple of resources that you may find useful:

The Early Start Denver Model was a book and mode of therapy that I often saw our diagnosticians recommend for families who either had just gotten a diagnosis but were waitlisted to get started on early intervention, or who had a child they were worried about but was not yet diagnosed. Their take on the activities in the ESDM book/model was that they were positive, helpful activies that a parent could begin to do on his or her own while waiting for other resources to get put into place.

The Thinking Person's Guide to Autism is a book and related blog that, full confession, I helped to copyedit on a volunteer basis because I had come to know one of the authors through my work and we'd become friendly. Many of the contributors are people with autism or their family members, and it seemed like a good resource to me as I was working on it. Their focus is very much on the joys as well as the challenges, and may be a good counterpoint to some of the gloom you may find as you start to research the subject.

I was going to suggest the First 100 days kit as well, despite the issues with Autism Speaks, but goggie beat me to it.
posted by Stacey at 9:43 AM on August 8, 2014 [1 favorite]

Oh! Yes to ASAN and Thinking Person's Guide. They are both amazing resources and the places I point people for informed, neurodiversity-embracing, rational information about Autism.

Agreed about generally avoiding Autism Speaks. They hold out some very negative and dangerous ideas about Autism, but the kits can be helpful. As a rule of thumb for you, anything or any group that purports to "cure" or "beat" autism, is very likely to be something you are better to steer clear of.
posted by goggie at 9:54 AM on August 8, 2014

I have a young friend who's half way through university and just got married this summer to a lovely woman. He's funny, smart, musical and autistic. Don't be afraid that any of the dreams you have for your little guy are out of reach just because of this new diagnosis. Hugs.
posted by kate4914 at 10:22 AM on August 8, 2014 [1 favorite]

I have autism and am worried about some of the language that is being used here. If you want, you can call or email, and I can give you some solid grounding.
posted by PinkMoose at 10:54 AM on August 8, 2014 [2 favorites]

My friend has a daughter who is 19 with Asperger Syndrome. He said the book Can I Tell You About Asperger Syndrome immensely helped both him and his daughter understand and explain to others some of her uniqueness.
posted by jillithd at 10:59 AM on August 8, 2014

This book (The Verbal Behavior Approach) was very very helpful for us in the same situation. In particular, the section about sign language was completely revolutionary for us, and was the start of a huge amount of progress.

There are such a huge range of outcomes with autism that you never know how things will go, but I will say that for us, frequent speech therapy combined with weekly ABA therapy has been completely transformational in terms of our son's quality of life and daily functioning, and our sanity as well.
posted by Dr.Enormous at 11:10 AM on August 8, 2014

This may sound kind if weird, but I would encourage you and your husband/partner to take a step back and get some marriage counseling together as you start moving through the post diagnosis period. The fact that you use the word "dreaded" in tandem with your son's diagnosis is totally understandable, but it may really help you and your family if you and your partner start to unpack your fears together as a parenting team and couple while you investigate what it means to be parents to a child with autism. Having a child with any diagnosis can be really stressful and hard on a couple, and strengthening your bond now is crucial so that the stress doesn't infringe upon your ability to stay united as a team.
posted by Hermione Granger at 11:37 AM on August 8, 2014 [1 favorite]

Additional note: an official autism diagnosis can actually be a blessing, as it can make getting services much easier (and sometimes cheaper) than a nebulous "well, something's going on" situation. Our experiences with schools and insurance has been a hundred times smoother than that of some friends whose son's diagnosis was nebulous.

I have personally taught an autistic child whose peers couldn't even tell (I knew because of the IEP of course, but there were also visible signs); they thought the student was just a bit odd. This was somebody who had tested in the bottom 5% for functioning in almost everything, and was one of the best students I've ever had...in an advanced class. My son seems to be on the same path, but I have no expectations--only hopes. No matter how bleak it may seem now, you just have no idea how quickly things can change; all you can do is hope for the best and get as much help as you can.

Don't freak out. You will have hundreds of weird experiences that most other parents never do. Some of them will be annoying or problematic. Some of them will be hilarious and wonderful. Some of them will simply be confusing.
posted by Dr.Enormous at 1:23 PM on August 8, 2014

I'd second the marriage counselling. Friends of mine have a child with autism and they started counselling even though their relationship is the most solid I've ever seen. Raising a kid with autism can be exhausting, and they wanted to make sure they were still focusing on each other in the proper ways.

Also, there are a ton of blogs and Facebook groups and such out there that my friends frequent. I've learned so much just from reading their links. That community can really be crucial with understanding things and just plain coping.

Something I found interesting was their openness in disguising their son's diagnosis with him. They embraced it from the get-go and I think it has really helped him to understand his differences rather than be frustrated by them and withdraw even further.

It's a tough situation, no doubt about it. But kids on the spectrum are often very interesting people with unique takes on life. Good luck with everything.
posted by peterdarbyshire at 1:23 PM on August 8, 2014 [1 favorite]

There is an amazing true story of a single (?) woman and her 5 kids (I think all were on the spectrum) and how she was determined the disgnoses would not hold them back - a film and documentary were made (shes English).. can't remember more though you'll have to rummage for names etc. On top of all that she also got a degree and a blackbelt whilst being a heroine and supermum.
posted by tanktop at 1:47 PM on August 8, 2014

I don't have any specific advice about autism, but nth-ing the opinion that it's actually better once you get a diagnosis. Once my kid was formally diagnosed with CP, suddenly we were fast tracked through all of the 9-12 month wait lists we were on.
At the time, the diagnosis was also devastating for us, so I feel for you. But in the long run, having that formal name to slap on it makes it a lot easier for you to navigate and access the early intervention and medical systems.
posted by bluebelle at 8:10 PM on August 8, 2014

Please don't read Far from the Tree unless you are brilliant at extracting positive messages. It is full of horror stories. After my infant nephew was diagnosed with a neurological disorder (not autism), I made the mistake of reading the Solomon book and spent the whole weekend crying.
posted by bad grammar at 3:19 PM on August 9, 2014

Things to look into and educate yourself: speech therapy, sign language for immediate needs, auditory processing disorder, visual processing issues. Many kids on the spectrum have fine and large muscle control issues, that play into some of the above. The nice thing is that they can be treated through therapy and can make a huge difference in how things go for your son.

My oldest son has issues that I feel are beyond the ADHD he was diagnosed with. I think he is on the spectrum. He was like your son at that age. Didn't talk, rarely interacted with other kids. He has had speech therapy since he was 3, did Occupational Therapy for about 5 years, did a round of vision therapy right after the diagnosis, which made a huge difference in the h in the ADHD, as well as reading. We have done Earobics, an auditory processing computer program. Not all of these are age appropriate for your son, just check into them in case you need them later.

They don't call it a spectrum for nothing. As your son gets help and matures, he will move in a good way along it. Temple Granden has done some radio interviews you might want to listen to. It sounded like she was on the far end of the spectrum as a young child, but had family who really pushed her. No, life is not always easy for her. Nor is it for my son. But...it is life. My son has come so far, and I am sure your son will too.
posted by 101cats at 6:30 PM on August 9, 2014

My fiance (halfway through his PhD in Quantum Chemistry before deciding to write books) was recently diagnosed with Aspergers. So's his mother (has a Masters, currently in a PhD). We're PRETTY sure I have "it" too (they're more on the learning disability side, I have empathy problems and some of the physical sensitivities) - but I'm in a great job and diagnosis in adults is expensive and a pain in the ass. We both grew up in more rural schools just when diagnosis was sort of coming into vogue. Bizarrely enough, he's an excellent public speaker, and I'm in a teaching position. We're social in our own way - we just find it easier to be social in the context of a game or other constructed interaction (or talking about it) - freeform socialization remains confusing and kind of scary.

Just remember, 20-30 years ago, the people with slight autism were better known as "awkward", or "nerds" or, "engineers". It's not a new condition, it's just one where people are catching it and getting help instead of muddling through and feeling like terrible humans for half (or all) their life.

If it's significant autism (or even if it's on the high-functioning end), it'll be a challenge, but it's not an "error", it's just we're running a different operating system and sometimes it's Windows 7, sometimes it's Linux.
posted by aggyface at 9:13 PM on August 9, 2014 [2 favorites]

Sorry for the delay in response. I saw this while on vacation and haven't had a chance to get to a computer until now.

First of all, congratulations. I know it can seem like your world is ending when you have child diagnosed with special needs, but this is not the end, but the beginning. A diagnosis doesn't just open doors to forms of therapies, but it also will help you better connect to your child. My life has been so enriched by my autistic son and I feel privileged to be his parent. Of course, it can be difficult, but most of the difficulty I've found has been in dealing with other people and fighting to get him the services he needs. I hope you live in a better place than the US when it comes to providing help and support for individuals with special needs and their families.

If you are on facebook, then I suggest searching for and joining groups devoted to evidence-based approaches to autism. There is a lot of woo and people acting as though your child is broken and needs to be fixed. They'll push diets and pills and therapies that will hurt your pocket book and not help your child. I very firmly believe that my son does not need to be cured of his autism. The point of therapy is not to fit him into some Neurotypical (NT) cookie cutter mold, but to help him live more fully with us. One nice thing about having twins with one on the spectrum is that I can see that my son with autism is not less than my NT son, he's just different. He has his weaknesses compared to his brother, but he also has a lot of strengths.

I also suggest that you don't avoid ABA therapy, just approach it with caution. Early forms of ABA therapy involved abuse of autistic children as parents and therapists pushed for individuals to appear NT by focusing on outward appearances. For example, if a child had a sensory issue and didn't enjoy touching certain substances, they would force a child to touch that substance over and over until the child stopped showing a reaction. The child just learned not to show their reaction instead of overcoming their distaste. Children were also punished for stimming, especially children who flapped their hands. There is absolutely nothing wrong with hand flapping or other forms of stimming. My son stims by playing music or making certain sounds over and over again. When he stims, I don't try to stop him or punish him, but join in with him so that it is a way for us to connect to each other. When I can tell he's getting stressed, I try to help calm him by singing the song he most enjoys stimming with. When seeking out ABA therapists, I made it very clear that I had no desire to make my son appear as NT as possible and I wouldn't tolerate abusive forms of therapy. I found a company that agrees with my approach and they use only positive reinforcement and treat my son in such a way that he loves his therapy and sees them as playmates.

When my son was diagnosed with autism at 17 months, he couldn't understand words or pointing. In just one month after starting ABA, he said his first word and, at 4 months out, he is now only moderately delayed in expressive speech and his receptive speech grows daily (and I suspect he understands far more than he shows on testing). He points and looks to where we point. He is doing so much better with joint attention and in his interactions with others. He's really blossomed and has fewer meltdowns due to miscommunication or because I don't understand why he is upset.

I avoid autism speaks in favor of local support groups and communities like r/autism on reddit, which has a mix of autistic adults and parents of children with autism. I think it is very important to older autistic individuals to learn more about how to better help your child since something that may seem harmless to you may be quite stressful for your child. At the same time, seeing what my autistic brother struggled with most in his life has helped me focus on what I want to teach my son.

As far as books, here are the ones most commonly recommended by pro-autism, evidence-based parents:
Engaging Autism by Greenspan and Wieder
Ten Things Every Child With Autism Wishes You Knew by Notbohm
The Reason I Jump by Naoki Higashida
More Than Words by Sussman to help with speech.
The Out-Of-Sync-Child by Kranowitz to help if your child has SPD (my son does not).
Temple Grandin also has some very good books.

Feel free to message me with questions.
posted by PrimateFan at 2:03 PM on August 12, 2014 [1 favorite]

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