talking to a mom afraid of autism

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One of my mother's coworkers broke down in tears today because she's afraid her toddler might have autism. (She has a little girl around 15-18 months, not sure exact age.) I didn't get much details, but apparently the kid may be regressing in language and might be doing some stimming.

My Mom volunteered to get me to spend lunch with this mother in a few days and talk to her about her kid. I know a lot about autism, of course, and I've recently been reading up on early signs in toddlers, so I've got her covered on the factual end. It's the emotional that I'm wondering about, and I'm hoping someone who's been in this woman's shoes can advise me on that.

Firstly, I was thinking of giving her a copy of the M-CHAT and talking her through how to score it, to get a clearer idea of where this kid is at. If her kid seems NT, I'll just tell her everything's fine, and if she seems autistic (or delayed - hard to tell at that age) I'll give her some advice for how to help and try to tell her autism isn't as horrible as people make out. However, I have a few questions.

Firstly, the M-CHAT is not really accurate below 18 months (most NT kids under 18 months fail certain items, like playing pretend, because those skills don't develop until later). If her daughter is below this age, should I give it to her while telling her it'll only be accurate once she's 18 months old and why? Or is she likely to try to apply it to her kid anyway and freak out when her kid fails the items that she's too young for?

Secondly, what is likely to make her feel better if her kid really does seem autistic? Would knowing I'm autistic, and that there are many high functioning autistics help? Would knowing that LFA doesn't have to mean unhappy or no emotional connection be helpful? Would being given concrete and easy-to-apply early intervention tips help?

Thirdly, since my Mom mentioned regression, I'm a bit worried, since there are some rare conditions which can cause regression as well. Some of which are way worse than autism (as in fatal in childhood). It's unlikely her kid has any of these, but on the off chance that she does, would it be better to raise the suspicion now so she can get prepared? Also, if her kid is just autistic, would it be really cruel to warn her that it could be something way worse? Or would it mostly help her feel grateful to find out her kid isn't dying? (I'm thinking if she's an Ashkenazi Jew, I'll definitely raise this concern, because the risk is much higher for that ethnic group.)

Plus, I'm worried about the effect that her worrying could have on her kid, because children often pick up on parents' distress, and toddlers are especially sensitive to anything affecting how their parents interact with them. How can I encourage her to stay calm and enjoy her kid, even as she checks out the possibility of this girl having a disability?

First, I would avoid giving any diagnostic impressions at all. It is not appropriate. But you can tell her that she can request an evaluation through early intervention if she is worried.

Second, talking to you will probably help in and of itself. When my daughter was first diagnosed, the thing that broke my heart was picturing her sitting in a corner somewhere, rocking back and forth, alone and unhappy. Once I started to interact with adults on the spectrum, I learned very quickly that she was not doomed. The adults that I was surrounded by when she was first diagnosed were some of the most thoughtful, caring people I have ever known. They patiently answered my ignorant questions and helped me see things in a whole new way.

I might ask her what worries her the most. Then, try to phrase your answers in as positive of a way as you can. You need to be honest, so that it doesn't come off as you sugar coating everything, but she needs to know that there are many pictures of autism out there aside from whatever one she has painted in her head. You could tell her about us, and let her know you have met plenty of parents of kids on the spectrum who are very happy with the kids they've got. You could direct her here.

Just be yourself, Ettina. She needs to see something other than the scary images she has loaded into her head. You can do that for her. You are smart, caring, and kind. I think those are three things that most new parents are afraid their kids will never be.

i agree with InThisTogether. I think that it's best not to offer suggestions about other things that could cause regression since there is no way of knowing until the child is properly diagnosed, and the mom is already having anxiety. But, I would definitely encourage her to have her child assessed if she feels her child is regressing.

I have not been in her shoes. I suspected something was different about my child right away, I just did not know what it was. By the time he was diagnosed, I was relieved we finally knew for sure. My son never regressed, he just moved at his own pace. I would think that watching your child lose skills is scary.

I think just listening to her concerns/ questions and answering them without judgement towards her fear of autism/ probable misconceptions would be really helpful for her. And, I agree that directing her here could be helpful.

I think the thing that worried me the most was the idea that my son would never have friends, and always be lonely. An old friend of my husband's happens to run an art studio for adults on the spectrum, and she invited us over to visit and meet the artists. When I met the artists, I stopped worrying about it.

15-18 months? Seems really young to me to be worried. I would tell her to seek the advice of a professional, but it's hard to find someone to take a look at a kid that young and take the parent seriously unless it's blazingly obvious. A lot of kids don't talk or have many skills at that age and it's not at all uncommon for kids that age to learn a "skill" and then move on to another while seeming to have forgotten what they just learned.

Well, I met with her, and it went well. We talked over lunch about her daughter, about autism, about sensory processing issues, about the misconceptions about autism being spread by autism associations and people marketing early intervention, and at the end she was feeling a lot better. (What I felt especially good about was that she'd been talking about 'autistic children' the whole time, and then towards the end of our lunch, she caught herself and said 'autistic people' instead.) She seemed especially struck by the fact that many autistic people (myself included) don't want a cure, and found that very reassuring.

Turns out she's 17 months old, and due for an assessment in a month. (The mother was very relieved when I told her waiting a month will make no difference - measurable benefits of early intervention only show up with age groups that are around 4 years apart or more.) She's very hypersensitive to a lot of stimuli (having her hair washed or her diaper changed triggers meltdowns), so I gave her mom some advice on handling overload. Her instincts were to comfort or distract her daughter, but I told her that if a child is overloaded, it's best to avoid further stimulation. I also reassured her that autism with or without regression doesn't seem to differ much in outcome, with a range from HFA to LFA in both groups (she thought regression = more severe). Some things she was worried about were typical for that age, like stimming (unusual for older kids, but NT toddlers often stim). Other things were a bit more unusual - she's gone from 3 words to only one, she's very sensitive to stimuli, and she doesn't make much eye contact. However, whether she's autistic or not, I think I've gotten this mom convinced it won't be a horrible thing.

Good for you! Nice job!

Anything is less scary when you have a real version in front of you; it's the things you imagine that are frightening. When DS was first diagnosed, I really wanted an autistic adult to talk to...I hadn't realized, or perhaps hadn't processed at that time that I was also on the spectrum. WP was a huge help to me for just that reason - but I'm glad this Mom got a real, live person to talk to.

I was incredibly stressed when my son was diagnosed with autism UNTIL I found this site. Later, found Tony Attwood and a list of autistic traits in adults. When my husband said "oh my, that's you!", my stress improved greatly. I do believe that seeing adults on the spectrum, reading about how some didn't talk, how some STILL STIM, how I am just like my son, etc. truly helped me to have a very different perspective and more than anything, it helped me to help my son. He has improved drastically since his diagnosis. He was not diagnosed until he was 5 or 5 1/2...speech therapy started after that and his speech originally was that of a 1 1/2 yr old or so. I remember my first posts here about my son doesn't speak and some saying "ah, I didn't either until I was 7, etc..." This site has been a true blessing in our lives.