 I know you struggle. I know that verbal doesn't mean what people think it means and I know how crushing it can be to watch other kids reject your child because they're different.
I also know it can be unbelievably frustrating and infuriating to constantly feel you have to prove your child has a disability that requires services and accommodations. You might be spending your days attempting to prove the diagnosis to family and professionals who prefer to believe your child's issues are a result of shitty parenting, your paranoia or even a diagnosis-happy generation. You probably hold your tongue (or maybe you don't) when you hear autism being described as the 'diagnosis du jour' or the 'flavour of the month' and you might even have to count to ten when people make comments like, "Autism! In my day we called it spoiled brat." I applaud you for staying out of jail, I do. You're up against it and you keep going and you spend your days trying to prove your child is disabled (and that hurts like a motherfucker) and you are forced to consistently repeat all the things that are ''wrong'' with your child, in an attempt to get the services they deserve. Then you feel guilty because there are so many at the other end of the spectrum, where the autism is so very clear, and so very serious and you find yourself wondering if you have any right to feel bad, at all. "He doesn't look autistic?" "But, she's so cute" "Will he grow out of it?" "What's her talent?" "At least he can talk." You see the dark side of the quirky version of autism'. The side where your child has no friends and although appears to be able to function in society, will probably never live independently, paralyzed by anxiety and the fear of social interaction, or conversely, oblivious to their social deficit and so aggressively social that people shy away unsure of how to interact. And while you stay awake at night wondering if they'll have friends, be invited to birthday parties, have a relationship, live independently or any of those things that all parents wish for their children, you're also going over their deficits again and again so you can list them at tomorrow's meeting when the school team tells you they are removing support because there are other children who need it more. You're constantly being asked to prove there is something wrong with your child and there is something inherently wrong with that. That's the kind of thing that can tear a person apart. I write this, not because I have the answer, but to let you know that I live here, too, and so many of us do.
30 Comments
Jacqueline Patron
2/7/2016 05:59:40 am
Oh my god! Yes, sooooo true. You said it very accurately! Since our daughter turned 1, we knew she wasn't quite right. The sleepless nights, night terrors, the no talking until 3'ish, the no eating or very little, the melt downs that would last an hour or more..... By 2, both my husband and I knew it could be 2 things but we had to wait for someone to assess her. During that next year and because it could have been these 2 things that sort of mirror each other, I followed and applied behavioural therapy at home on my own...as best as I could without formal training, put our family on a regurous schedule, same stuff day in and out, same shopping routines etc.... A lot of work went on before her Autism diagnosis and even then, after she improved, she still received a diagnosis because a trained psychologist saw that her brain doesn't function just quite right! She improved some more through the next year because she was receiving more early intervention with speech therapy etc... My whole point is, for children who are on the one end of the spectrum... 1/2 and up or as many call high functioning, Early Intervention works because even though their brains are wired differently, their brains are so new and fresh that they can be "re-wired" a bit and show improvement with their behaviours and speech. But are they still autistic? Damn right they still are! We still have set backs if her schedule is changed in a way she can't figure it out or can't cope with, her speech still needs to improve, she still lacks the ability to make friends, she's a flight risk.... This list can go on.... And yet she is turning 5, once in public school, all extra help stops with the autism centre and is supposed to be continued on through the school. However, we are all ready being told that she probably won't get extra support because she isn't so "needy". And speech therapy will be reduced to once a month... If early intervention works? Then why take it away to almost nothing? !!
Sharon
2/10/2016 01:16:40 pm
...you are so right....'If early intervention works? Then why take away to almost nothing?' All children are so important...I don't believe that starting a public school, should by any means stop the needed intervention.....:(
Kerry
2/17/2016 02:30:59 pm
I know how u feel my lads now 12 struggled all the way thro school to recently being diagnosed with adhd and asd it's been a night mare most of his life nowing that he's struggled so much but now hopefully he will get the help he finally deserves in school. 2/7/2016 07:59:22 am
This happened to us, too, and kept us from services for our son who was no longer getting to high school. I wrote Beyond Rain Man: What one psychologist learned raising a son on the autism spectrum (will be published in April) for two reasons: to help families going through this now, and to educate professionals about the breadth of the spectrum and the needs of kids on it. This is my passion, too!
Dominique S
2/7/2016 09:21:32 am
Oh my goodness! So true! I have a high functioning daughter with ASD, CP and a chromo dup. After 10 minutes people always want to tell me she's fine. I'm constantly saying wait until you spend some time with her and you'll see everything that's wrong. Feels crappy as a parent... You feel like you can't celebrate the gains without a followup comment on what still needs to be worked on :(
Juanita Z
2/7/2016 10:13:47 am
I completely understand your frustration. I'm praying for strength for u and your family. From one ASD mommy to another!
Jess
2/7/2016 10:21:11 am
I love your description : "so aggressively social" ... That describes my daughter to a tee! (BUT she's so friendly...)
Ellie
2/7/2016 06:17:57 pm
Thank you for putting it so eloquently.
Leonie leonard
2/8/2016 03:31:25 am
Thank you
Kim
2/8/2016 09:02:46 am
nailed it!
Lucy Giusto
2/8/2016 07:38:31 pm
My best friend shared your post with me because it summarizes my experiences with my daughter. The principal and school psychologist continually told me that my daughter was "fine" and did not need testing. I would get calls to pick her up from school because she was having melt downs. I finally got fed up when the school secretary called me to pick her up again. I told the secretary that the best people to deal with my daughter would be the principal and the psychologist because they say that she is "fine". All of a sudden, they recommended testing.
Jess
2/18/2016 08:34:48 pm
"The flavor of autism" people never seem to amaze me and just what "flavor" is that? I would think its the sweetest flavor ever tasted. 2/9/2016 06:52:01 am
These stories of professionals still not getting it make me so upset. There is no such thing as a flavor of autism, it's a spectrum--and it looks different for every person! I am one school psychologist who does know what the autism spectrum is, probably because I have a kid of my own on it. I still find myself frustrated with private practice clinicians (and some other school psychs) who don't know the spectrum and who continue to diagnose kids with ADHD and myriad conditions when it's really ASD. I've seen research showing that ADHD diagnoses can delay the autism Dx for years. I wish I could train developmental pediatricians, psychiatrists, clinical psychologists in what ASD is--and how girls present differently from boys, etc. Anyway, I wrote Beyond Rain Man exactly because of this and hope to get it into the hands of parents who can take it to their doctors and schools to advocate for their kids. It's available soon, and I hope it can help! I feel the same way with regards to my son who has Selective Mutism and Sensory Processing Disorder. He has many symptoms that overlap with Autism and I find myself wondering/worrying he may have Autism as well and what if we missed it. What if we are so focused on the SM that we missed some of the other symptoms. We never did a full neurological evaluation. Everything you said is so relatable. Especially the part about having to list your child's deficits to make sure he/she receives the appropriate and deserved services in school. We fight this battle each year and often daily with the administration. They think I'm an overprotective parent with a stubborn oppositional child. When in reality he's an anxious, nervous wreck at school and it doesn't help when the staff do not understand and do not treat him with the empathy and understanding he needs. ;) Thank you for letting us know you understand. 2/13/2016 08:16:36 am
Mel,
Lanae
2/17/2016 05:35:33 pm
I completely understand- I have 2 boys who in many ways are complete opposite of one another. My 7 1/2 year old was diagnosed with autism spectrum disorder ( mild) and anxiety and my 4-yr old was diagnosed with social communication disorder, dyspraxia and associated sensory processing disorder and early onset ADHD and OCD. The youngest scored autism on the GARS but not on the A-DOS so it was deemed " false positive." He is very social ( overly so) and prefers adults- mostly he likes the sensory aspect of socialization- touching and climbing on people. Anyway , my oldest is finally getting help with his diagnosis and my youngest not because insurance doesn't cover OT. Both are high functioning and appear " normal" at times. 2/18/2016 10:39:21 am
The ADOS is not sensitive enough for many high functioning kids on the spectrum and should never be used to rule out ASD on its own. It's given way too much weight in my opinion, and I've given it as part of my job many times. A good ASD evaluation includes a variety of measures with lots of attention to the developmental history since ASD diagnosis can be made based on historical behaviors. Unfortunately, many practitioners only rely on what they see in a clinic or office instead of how kids behave in social environments like school. Your younger son has what I call a "salad" diagnosis: lots of separate diagnoses when put together are probably ASD. Kids on the spectrum can show lots of social intent, but we have to assess their skills in relating to same age peers, since that's usually an area of relative weakness. It sounds like your youngest would benefit from the sensory regulation an OT can provide. I'd push for the correct diagnosis so insurance will pay. Alternatively, do you have a regional center that might evaluate and provide OT? Good luck!
Lanae
2/18/2016 08:22:43 pm
Thank you for your response. when I first got the diagnosis of my youngest I was relieved he was not on the spectrum but after reading about social communication disorder I am confused because it seems to be autism without the sensory issues and obsessions which he has. The big difference in him and my older son is that he seeks out affection but he is very overbearing and it's very sensory based- he likes to be squished and held tight and he will just touch random adults or try to get them to do things for him . He talks a lot but not very well with back and forth communication- just random facts or things he is interested in. It often takes 5+ times of talking to get his attention and we need to rule out absence seizures. I do agree OT would be good for him but we cannot afford it now. We have him in gymnastics now and that seems to help. 2/20/2016 01:01:22 pm
Lanae, I think you're probably right about your younger son and the social communication disorder not being correct. The OTs I work with call his style "sensory seeking" since he likes the firmer pressure for sensory input. When my son was young, our insurance wouldn't pay for OT either. I can't believe they're still pulling that. With the newer autism insurance laws, your insurance should pay for any therapies deemed necessary if he has the ASD diagnosis. Please tell your doctor to read my book; it will educate him/her!
Lanae Cherniske
10/27/2018 09:56:30 am
I saw this in my old emails and figured I would update . We finally saw a new psychologist who diagnosed Xander with autism spectrum ( PDA- pathological demand avoidance subtype), anxiety, and behavioral disorder. He was 6 and even the ADOS confirmed it. Anxiety and behavioral disorder were mostly part of the autism but the doctor suggested it so he could also access mental health resources if needed. Xander goes up and down. He is high functioning and in 1st grade mainstream school- doing good academically- has a great visual memory. We are working on getting g him some services because he has been struggling behaviorally and socially after holding it mostly together in kindergarten ( half day) and 1st month or so of 1st grade. He has speech ( mostly for pragmatic language), OT ( mostly sensory), behavioral therapy ( coping, social, following directions). I think the services have helped a lot. Thankfully we were able to start all of the above plus respite with his brother ( Aspergers type autism spectrum ) so sad and I could go out a few times a month . He originally qualified for a Medicaid waiver under “ developmental delay” until he turned 6.
I just wanted to pop in and tell you that everything will be okay. I am fifty years old and I am autistic. Childhood was horrible, my teenage years were chaotically dreadful and I hated school with a fiery passion (It was sooo boring) BUT I grew up. I learned how to be social, i learned how to be out in public, I learned all the things that I needed to learn in order to function in this sensory laden world. I am happily married, I am a mother and grandmother, I am a president of a not for profit ceramic association , I am a successful artist, and most importantly I am happy.I have friends who seem to really like me. I still get sensory overload and if given the choice I would only eat white food, I eat red and green food too. I only do little stims and my anxiety is manageable as long as i rememebr who I am supposed to be at any given time. (artist.shopper. president. etc)
Stefanie
2/21/2016 10:02:20 pm
Thank you for commenting! I just want hope that one day it will all be ok for my little boy. Everyone is made to be unique and different and I think that's what makes friendships and relationships so wonderful.
Jess
2/18/2016 08:55:56 pm
I am new to autism. My 4 yr old was just diagnosed in Jan but I started this back in Aug. one tester told me "the numbers are here, the numbers don't lie, but I am not gonna be the one to label it" of corse being new I just thanked her and went out to find a professional with the brains to do it. Now this lady wasted 2 months of my child's life. He could have went after funding right then and started a special school with all the therapies we needed. Thank god I found someone to help me. At first he was wishy washy until he asked me " why does a diagnosis mean so much to you" my reply was " it does mean a hill of beans to me what you write down that's my son and that will never change, but I need funding to get him the right education I am not giving up with a diagnosis I am pushing education". I guess that was the correct answer. My son started a special Theropy school this week and he and I love it. I drive 4 hours a day to make sure he gets what he needs oh and I hold a full time job too. But a mother knows and a mothers love can make Miricles happen. I know I am be blessed!! I just wish that people in the medical field would sharpen up on Autism. It's changed over the last few years and every case is not the same!!! I do still catch myself trying to explain and it comes out all wrong. So personally I still have a lot of learning and growing to do. 2/20/2016 01:06:14 pm
Jess, it's the medical field that has learning and growing to do. Mothers definitely know their kids, and doctors need to listen to them and get themselves caught up on what the spectrum is.
Susan
2/22/2016 05:41:05 am
Thank you! Thank you! Thank you! With tears in my eyes, I thank you.
This was very timely for me to read. For the first time, I had someone tell me "Well he doesn't look Autistic," referring to my 3.5 year old. I didn't know what to say, so I just said "He looks like his father."
June
2/23/2016 08:08:44 am
In the eighties when my son was born it was even worse. Nobody knew of autism really...he had "autistic tendancies" but there were not the facilities there are now to accommodate him. The nearest place was Gravesend in Kent....we live in Essex and he was 3 years old! Family who just didn't understand said I was "making a rod for my own back" and blamed his behaviour on me being "soft" etc. Trying to convince them that I wasn't imagining things were "wrong" was an uphill battle on its own, let alone the authorities. He did go to the local primary and was eventually statemented, so did get help for a while, (only 1/2 hour a day) but they tried to even scrap that through cutbacks. I fought and won (with full backing of the school who didn't want to lose this lady) but boy...it was a struggle. He is now 35, a father of 2 with a partner so I guess the autism is mild....however he is still odd and socially inept in many ways. Even worse when you are dealing with the less severe cases, trying to prove you're not an overprotective mum 9/19/2016 08:51:55 am
Thank you for posting this. I am autistic and highly driven to succeed. Because I am driven, and articulate, I get people doubting my diagnosis all the time. In fact, today I must make a video post on this very topic. I am so tired of having to make my autism fit other's conception of what autism should look like.
RH
2/17/2017 04:18:44 am
I'm reading this, and tears are streaming down my eyes. You've basically written how I feel every single day! I love my son more than anything I can imagine, and it kills me everyday at the thought of once we (his parents) are gone, who's going to look after him? Will he ever be able to live independently? Will he ever talk? (He's non verbal) ... will I ever hear him say mummy ... he is at nursery at present, and will be going to school this September. He doesn't know how to make friends, even though I've seen other children in the nursery try and talk to him. It's not his fault, he just doesn't know how to. I lay awake every night, thinking will he be ok at school? What if someone says something to him? What if someone does something to him? How will he tell me? It scares me more than anything! For the past 3 years I've been trying to fight to get a diagnosis, even though I keep getting told "why are you so determined to put a label on him?" ... determined??? I hate myself for doing this, but life can be shit and unfortunately my son can't access help without his so called label!! WITH this label, he has a CHANCE of maybe one day speaking via speech and language therapy ... maybe one day going to college or university ... maybe one day having a career ... maybe one day being independent and have his own family ... maybe. Even though it's all maybe's, I'm going to keep trying everything I can do to make sure he has a chance at having those maybe's and hopefully one day, those maybe's will turn into a reality. Well that's my prayer for him every night... Your comment will be posted after it is approved.
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